Love How This Girl is Taking On The TSA!

I stumbled upon this video this morning of a 16-year old girl who is taking on the TSA (Transportation Security Administration) about their lack of knowledge of how insulin pumps are affected by the full-body scanners at the airport:

I am SO happy to see this getting some press.  The truth is that YES, insulin pumps are not just affected by the full-body scanners, but they can in fact malfunction in dangerous ways (i.e., start bolusing out insulin without being asked to - not good when you're at 35,000 feet).  I have heard this from multiple PWDs who have experienced malfunctions after going through the scanners, ranging from mild to severe.

I travel a lot for work, and recently I asked one of the TSA agents if they had heard about insulin pumps being damaged by the scanners, and he said no, he hadn't heard that.  Then he proceeded to tell me that it was 100% safe to go through the scanner with your pump ... which I wasn't going to argue with at that point (especially since I was travelling alone, without my husband with type 1).

Now, we are about to take off for a 3-week trip to Spain and Italy in a few weeks, and this video was just another good reminder to make sure that we take some information with us to ensure that if we run into TSA agents at airport security who are not aware of the problem with the scanners and Tony's insulin pump (which I am guessing there are many), that we have documentation to back us up.  We will ALWAYS request a pat-down from this point on, to ensure that nothing interferes with the pump's ability to do it's job.

Even after 17 years of living with my husband's type 1, I am amazed at the lack of knowledge and understanding that people have around diabetes.  Even people who should know!  Like TSA agents for pete's sake!

A Chance to Connect With Others Who "Get It"

I had the absolute pleasure of attending the "Taking Control of Your Diabetes (TCOYD)" Conference here in San Diego this past weekend.  It's in its 9th year, and was my fourth time attending.  It is a great, empowering day for people to learn more and connect with others around diabetes, and I'm always happy to be a part of it.  Rather than try to explain what it's all about, here is a snippet of what a day at TCOYD is like:

Wonderfully, this year they had a "Type 1 Track", with workshops and content aimed specifically for people with type 1 (the people with type 2 had their own, unique track).  I was asked to help run a breakout workshop for spouses/partners (another first this year!)... and I was honored to participate.

It was encouraging and extremely validating to share my experience and to hear others' experience of loving someone with type 1.  It made me see how much we all have in common, no matter if our partners are men or women, in good control or not, have had diabetes 2 years, 10 years or 50 years!  The main commonality of course - the one that had everyone nodding in agreement - was the issue of anxiety ... our anxiety over lows, over our partner driving, over them being home alone with our small kids, over them being okay when we're out of town for work, over them taking care of themselves, over what the future holds... etc... I'm sure you all know what I mean.  

Other issues came up as well, particularly with the older participants in the group (although this is still relevant for us all) - for example, how to advocate for your partner to maintain control of their insulin delivery/glucose monitoring if they're in the hospital (and help them advocate for themselves)?  We also talked about strategies to be prepared for lows, and best ways to help our loved ones in those moments that they can't take care of themselves.

I think that some of the best discussion came when we started to talk about ourselves, and our own self-care, which often goes to the way-side when we spend so much time worrying about our partner's needs.  Oftentimes this can be a weight that we carry that we do not communicate... because why would we?  They're the ones dealing with the diabetes, not us, right?  However, we also need to realize that type 1 is difficult on us too, and there is no better place to express that than in a supportive group of people who "get it".

For me, one of the biggest parts of this journey of type 1 diabetes in the last 15 years has simply been figuring out my role, and how I fit into the picture.  This was another issue that seemed to resonate with the group.  How much "control" do I take?  How can I best partner with my husband to make this work?  How much involvement does he actually need?  It's nice to know that others feel the same, and talking about solutions and sharing thoughts is always incredibly helpful.  I am grateful to the participants of the workshop (and their brave spouses/partners with type 1 who came to join us!) for being open and sharing their own experiences.   

One other thing I want to make sure to mention is that the wonderful non-profit organization the Behavioral Diabetes Institute (who I've referred to many times, since I know the founders and have been involved with it since it's beginnings... and which really is the only organization that deals with peoples' unmet emotional and psychological needs around diabetes), is finally developing an online support program for spouses (I am thrilled)!  However, to make this the most impactful and useful program they can, they need your help!  The diabetes psychologists behind the program's development (the fabulous Drs. Bill Polonsky and Susan Guzman) have created an online survey to gather as many spouse's/partner's feedback as they can to customize the online support program... and they would welcome (and need) your input!  The survey only takes about 10 minutes to fill out, and is wonderful - I've already taken it and given my feedback.  You can find the survey here:

http://behavioraldiabetesinstitute.org/Just-For-Partners-Program.html.

Please do fill it out and let your voice be heard.   It will only help!  The more support out there we can create for us spouses/partners, the better.

I look forward to hearing from you!

Casualty of Diabetes: Silliness

In the 15 years since my husband Tony developed type 1 diabetes, there have been many ways that the disease has infiltrated and affected our lives.  Most of these things have been obvious, and include much of what I've shared in this blog ... the anxieties, the work it takes to maintain balance, the challenges that daily living with diabetes takes, from both our sides.

It took me a while to realize that there was something else that had changed in our lives post-diagnosis  ... it was very subtle, but I realized that I missed it very much.  

Silliness.

Yes, silliness. The ability for Tony to loosen up and be silly, be spontaneous, be goofy ... without me automatically feeling that need to go on the defensive, check his pupils, question his sugar level. At certain times this need is magnified - for example if alcohol is involved.  However, it is true at any time, regardless of where we are or what we are doing.   What a sad thing for him to lose that feeling of spontaneity, that ability to have fun without having his intent or mental status checked!  What a sad thing for us as a couple to lose that innate sense of fun that we had before he was diagnosed, that sense of ease with loosening up and being in the moment.

It struck me that this may be a quiet, disconcerting thing for a lot of us spouses... and that we may mourn the loss of this in our lives more than we realized.  At least that's true for me, and I'm sure it's true for my husband.

The question of course is how to combat the feeling of loss that may accompany this experience.  How do we build in ways to get past our own anxieties and read any given situation for what it is?  How do we best communicate with our partners to try and understand where they are at?

Unfortunately I don't have any answers on this one... but I'm sure that some of you may!  Feel free to comment and share some of your thoughts or strategies on how you've managed this in your own lives.  We'd love to know.

Taking the Plunge

Since we have diabetes in the family, my husband and I have decided to take our two children, ages 4 and 9, to the TrialNet event here in San Diego tomorrow, where they will be screened for the antibodies responsible for the development of type 1. Not only will we be contributing to a very important study on how to prevent, delay and reverse the progression of type 1 diabetes, we will be finding out some critical information on our own kids' likelihood to develop the disease.

But I'm petrified.

It's not logical, I know ... but as a mother I am terrified to find out whether one of my beautiful children has the markers that mean they will develop type 1 diabetes in the next 5 or so years. Sometimes the fear takes over rational thought... the idea of such little people having to deal with this disease on an hourly basis makes me want to weep. And I know that my husband feels the same way... and even moreso, because if one of our kids does test positive, then somehow he feels it is "his fault", since his genes are the ones bringing diabetes into their lives...

However, my husband and I are choosing not to stay in the fear, not to bury our heads in the sand, thinking that not knowing is better than knowing. Five years ago perhaps - when there wasn't anything out there to DO with the knowledge ... then yes, we would have had a reason to avoid the information. But now, with the advances in research and the clinical trials out there that are helping if not to completely prevent the onset of type 1, to postpone it by a number of years, we have no excuse not to do this.

And so it is time to face the fear ... to take the plunge. Hopefully our children will be one of the 96% of family members of people with type 1 who do not test positive for the antibodies (96 people out of 100 test negative), and all this fear will be a moot point.

But if they do test positive, or one of them does, we will face it the same way that we faced my husband's original diagnosis 15 years ago - together, with strength, and with positive action.

How Do Our Spouses w/ Diabetes Feel About Us?

I just stumbled across this video from dLife, where PWDs are interviewed about how they feel about their spouse's (usually well-meaning) intervention into their daily diabetes management. I find it really interesting! I think that often our spouses are not necessarily that forth-coming with how our efforts make them feel...

Take a look and see what you think... any of this sound familiar in your house?

Rude Awakening

There's nothing that snaps you awake at 3am quite as quickly as discovering that your spouse / partner / loved one with diabetes is in the throes of a serious low.

It happened to us just the other night. For some reason I woke up at 3am, and in attempting to get my husband to move over (he was like a dead weight, which should have been my first clue) I reached over and found him drenched in that cold sweat ... hands, legs, neck, arms, everywhere. And it was bad, a LOT of sweat... which isn't normal for him, even when he's low. I was suddenly wide awake, on alert, realizing that he needed my help.

My husband has had type 1 now for 14 years. Through these years we've had our share of diabetes highs and lows, but luckily only a handful of really serious episodes. I realized in an instant the other night that this was one of those episodes.

A few years ago I would have completely panicked, and wasted time trying to get him to test his sugars (which he was completely unable to do), or talking AT him to do things... "drink the juice", "test", or peppering him with questions as to how he was feeling. But recently I've learned from him, particularly from his last serious low, and I kept all that he told me in mind as I navigated this critical situation.

Firstly, I kept it calm and quiet. My husband shared with me after his last serious low that when I talk to him during those episodes it is as if 20 people are talking to him at once, and he cannot process what is being said. So instead, I got up and went to the kitchen for juice, no words spoken. I came back to bed and simply held my husband's head up and supported his shoulders so that he could drink the juice without spilling. The only thing I said to him (quietly) was "you need juice", and then sat behind him, held the glass and fed him sips of juice every few seconds. I had to keep him upright because he wanted to just slip back down into a sleeping position, but I made sure he could still drink. As long as the majority of the juice was going down, and I knew it would do the job and I wouldn't have to hunt for the glucagon. I did this for about 30 minutes, quietly and calmly, trusting that he would slowly come back up ... which he did.

The one thing I also realized is that I had no idea how to turn off his insulin pump. I didn't want to start pushing buttons because I certainly didn't want to end up bolusing more insulin into his system. Short of ripping his site out, I didn't know how to stop the insulin! This was a rude awakening as well - that as prepared as I thought I was, I had overlooked this one important factor. That was the first thing I had him show me the next morning - and I am now an expert at suspending his pump. But it reminded me of the things I forget to know, until I'm in a situation where I need to know them. Not good - better to be prepared ahead of time and save yourself the stress.

Luckily my husband came back up and came to his senses - by the time he tested he was at 87, definitely a comfortable zone for me. Within an hour we were both able to go back to sleep knowing that all was well.

What I find interesting though, is that even though everything went smoothly and turned out well, I've still been processing the episode for the last two days, going over it in my head. I think the thing that plagues me the most is the "what if"... what if I hadn't woken up? what if I had been travelling and wasn't home? (we also have two small children, so this is of course a concern) what if it had progressed further?

The funny thing about these episodes is that they are critical in the moment, but once the moment is over, they are done. You go on with your life. But I think what I realize as I write this down, is that the episodes are over physically, but not emotionally. These episodes stay with my in my psyche, as I'm sure they do with every other spouse out there. It is difficult to see your loved one in such a state of need, and for some that may wear them down.

But I choose to look at this a different way. What I really see it coming down to is partnership. I suffer from migraine headaches - the kind where you're completely incapacitated and unable to function - and every time that I've had an episode in the last 20+ years that we've been together, my husband has stepped up, and taken care of me, our kids, and everything else as I've needed him to. His lows are similar to me - sometimes he needs me to step up, and when he does I am there. It is part of our partnership as a couple, recognizing that we truly need and are there to look out for each other. It's what helps me keep these emotional memories of his serious lows in check.

The lows are what they are. The experience of supporting him through one is what it is. But how I choose to frame them in my psyche is up to me. And you.

How is living with your partner's diabetes for YOU? Tell us more ...

Since I've been receiving some wonderful comments and email from the posts that I've put out here on my experiences of living with someone with type 1, I thought I'd ask you all to share some of your experiences too.

Although we know that we are not alone in living with someone with diabetes, we also know that it can be somewhat isolating at times. There aren't nearly as many resources or knowledgeable sources for the kind of specific issues we as spouses, partners and loved ones of people with diabetes face. One of my biggest goals in starting this blog was to provide a place that people might find some commonality with their own experience - a chance to hear from someone who "gets it". But I would love to hear from more of you - you all have as much experience, wisdom and "lessons learned" as I do. Let's hear them! Let's put it out there and see if indeed there ARE things that we can enlighten each other on... find support for ... get validation of...

So I would ask: How is it for you in your daily living with a person with diabetes? What are the most critical issues you face? The biggest challenges? The most powerful wins? The biggest anxieties?

How much do you feel "control" issues affect your relationship (yours or theirs!)? Are you happy with how your loved one takes care of themselves? How much does diabetes-related fear and anxiety affect your overall wellbeing? How well do you both communicate around their diabetes? Are there any "hidden emotions" at play in the relationship around the diabetes? Are they (or you) getting "burned out" by it all? How do you cope?

What else? I'd love to hear your story.

Lows, lows, lows...

Well, it happened again today. One of those scary low blood sugars in my husband when I least expected it. This was a bad one - I am lucky to say that in our 12 years of dealing with his diabetes (since he was diagnosed), I've only really dealt with a handful of "serious" lows... the kind that make your stomach knot and your knees weaken, when you realize the place your loved one is in and you don't know exactly how much time you have to intervene before it gets to the calling-the-paramedics kind of low. I'm sure you all know what I mean.

Luckily we were in a stable place when this happened - at home, the kids happily engrossed in a movie - so that we were able to move through it and come out the other side quickly. Funny thing, because of the kind of low this was - i.e., my husband got so low that he was not making sense, lost his judgement of things, and was becoming combative at my attempts to get him to test or drink some juice - and because we sat together as he was coming back up and out of it, we had a chance to talk about what had happened (once he was relatively normal again) and to figure out what we could do differently next time. It was a real learning for me, and I wanted to share with you my thoughts, in case it might help you in the same situation.

Learning Point #1: Back off, way off

As I realized how low my husband was (even though he refused to test or let me help him test in that state, which just validated how low he was), my anxiety kicked into gear. My hands started to shake. I tried to stay calm and "convince" him to have some juice simply because I wanted some too ... and I placed it on the table in front of him. However, the more I asked him to drink it, the more he rebuffed it and pushed it away. The more I gave his meter to him at the table, the more he refused to do it, saying "I didn't get it!" (whatever that meant at that time, I'm still not sure). Luckily, finally, he gave in and tested his blood and drank the juice - and then almost immediately started showing signs of coming back up and out of the low. In the same minute he went from fighting me to a sudden awareness of what was going on - when he looked over at me and said "I'm acting stupid, aren't I?", the relief that flooded over me was palpable.

As he was coming up though, he told me something interesting - and important. He said that when I talk to him, or try to give him juice when he's like that, it's like 20 people being in the room talking to him at the same time. He said what he really needs at that time is less stimulation, because being that low is like "sensory overload" for him. It is too hard for him to process anything, and he said the best thing I could have done is left the room. Of course I said I couldn't do that, not when he's like that ... and then he agreed but said that I could have just left the immediate space, maybe sat further away and given him the time and space he needed to do it himself. It is difficult to think about doing this, but something I will think about and try to do appropriately in the future. Takes a leap of faith on my part though, I tell you!

Learning Point #2: TRUST

Something interesting that came out of this today too, was that before I knew about his situation, my husband was trying to wait until I left the room before treating his low - one of the reasons he got so low I think! Once he was back up again I asked him why? It became the same answer - he didn't want me to "freak out" or pressure him. However, we were able to have a discussion around it again that reinforced the fact that diabetes is a "team effort", and it takes trust. He needs to trust that I have his best interests at heart when my guidance during his lows becomes "intense" (as he perceives it), and I need to trust that he will be able to take care of things before they progress to that point. And I need to give him the space he needs to be able to do just that.

And I'll try, I really will.

Anyone else know what I mean?

Diabetes-Related Anxiety #1: Driving

I think that in this daily journey of living with a PWD, one of the hardest things for me to manage my anxiety around is driving. It seems like such a small thing, right? It is so much a part of our daily lives (especially here in Southern California!), something that we must do, something that is a given. But it is something that I still have difficulty with, even though it has been 13 years since my husband was diagnosed with type 1 and he is in very good control of his diabetes.

Now of course I'm not talking about my driving - that I'm good with! I'm talking about when my husband gets behind the wheel ... either with us as a family, or when he's commuting to work alone. Even though he is very proactive about checking his numbers and being safe in the car - he really is a great driver - it is that 5% "possibility" of problems that wears on me ... that little "diabetes fairy" that pings PWD on the shoulder occasionally and makes their numbers go completely out of whack without a lot of warning. This is what worries me.

Case in point: on a recent drive up to Los Angeles with my husband and I and our two little ones in the back seat, we were on the 405 freeway going about 70 miles an hour when my husband asked me to open up a juice box for him. I immediately jumped to attention, because this time I hadn't noticed any signals of him going low - he had checked his numbers before we began and although he had been running a bit high he was definitely in a safe zone for driving. When he asked for the juice he said he didn't think he was low, but since he had played soccer that morning he was having it just to keep everything level. I requested that he check his sugars "just in case", and I helped him do that while we were still driving.

The number on the meter shocked me: it was very low, lower than we had ever experienced while driving. My heart leaped out of my chest as I realized that he was way too low to be behind the wheel. I tried to conceal my sudden panic as I directed him to pull off of the freeway at the next exit. Luckily we were able to do so, treat his low, and I took over driving. All was alright - this time - but it was a true shock to the system, and it stayed with me ... some of the what if? playing back in my head throughout the day.

I was able to manage my own anxiety around the experience and finally shake it off, but I did keep thinking: what did this experience reinforce to me?

• That diabetes still has the ability to shake me up in ways that I didn't see coming - I sometimes think that after 13 years of living near the disease I have it all "under control" and know what to expect each and every day. Boy, was I wrong! This experience humbled me in a way - reminded me that I can't become complacent with it. Not the most positive lesson, but it is what it is. I have to accept that and move on.
  
  
• That it is very important for the PWD to listen to their body's important cues, especially while driving - when I asked my husband (after we had safely stopped) if he had felt this low coming, he said that he had had an "inkling" ... and then admitted that when he asked for the juice it had been more like his second or third "inkling" that he was getting low...but that he hadn't wanted to worry me. Lesson learned? Pull over with that first inkling that a low is happening! Our job as co-pilots is to make sure that our PWD feels okay enough (i.e., he or she is not going to get reprimanded, ridiculed, or "freaked out" at) to admit to a low and to do what they need to do while driving to pull off safely and treat it. It is not worth anyone's safety to do otherwise!
  
  
• That all you can do is be prepared - have that juice box handy, make sure the glucose meter is nearby, make sure that you are ready and willing to take over driving if need be. Make it easy on them, so that if and when they need you, you are good to go.

I'm sure that some of you have been through a similar situation. What are your "lessons learned"? I'd love to hear about and learn from your experiences. Please share!

When Conflict Catches You By Surprise

In all honesty, things have been going pretty well with both my husband and with his diabetes. He recently had a check-up with his Endo, and even though he was afraid otherwise (due to high-levels of stress at his job and subsequent blood sugar highs every day) his A1c was great, all numbers fine. Phew. I was proud of him and his effort, because I know, and recognize how much work it takes him to make those numbers happen and keep himself in check. Kudos to him.

So how does it happen that you're going along, all is well, your spousal "diabetes-anxiety" is kept in check, you're happy with how things are... and then BAM!, diabetes-related issues once again raise their ugly head and create conflict in your relationship. I thought, after 12+ years of dealing with this that I would be an expert at not "letting it get to me"... but once again I am humbled by the power of the diabetes' effect on our lives and my reactivity to it.

So here's the story - see if any of this sounds "familiar" to you?: my husband went out on a Saturday evening to have a beer or two with his soccer buddies, a very important one of whom was leaving to move to Bali, so this was his goodbye. My husband left early - around 6pm - saying that he would be home "in a couple of hours". No problem, off he goes, all is well.

Here is the challenge - it was a Saturday. Every Saturday morning my husband goes and plays soccer for 2-3 hours, which is fantastic for both his mental and physical health. Since he's from Barcelona, Spain, this few hours is his "religion", and I don't mess with it! The challenge is that such a burst of physical endurance sets him up for blood sugar lows all weekend - but we're used to this, he's been playing for more than 10 years with this same group of guys, and he's very good at controlling the lows. However, they are something that we've come to expect ... particularly a few hours after he gets home on Saturday, Saturday evening, and then again Sunday mid-morning. He combats it by lowering his basal rate of insulin (he's on the Medtronic pump), bolusing less, and keeping a close eye on his numbers by checking often. I'm not as "vigilant" as I used to be around these lows, but I still carry some anxiety about it, particularly since the only real significant low episodes he's had (a couple as low as 29!! but most bad ones in the 40s and 50s) have been after he's played soccer.

So, back to Saturday night - Tony goes out, and my expectation is that he'll be home before 9pm sometime. So 9pm rolls by, 10pm rolls by ... I try to call him on his cell phone, but he doesn't answer ... and by now I'm starting to get that pit of "worry" in my stomach, the one I hate, the one I try to "talk out of myself" by rationalizing what he is probably fine, can't hear the phone, etc. By 11pm, and after the second voicemail I leave, I am starting to get very fearful, my diabetes-anxiety has kicked in full gear. It didn't help that it was crashing and storming outside (something that we don't get very often here in San Diego!), and in my head I was creating all kinds of stories for myself: that he had a low, that he got into an accident on the way home, that the beer mixed with not enough food mixed with soccer could have created a low that clouded his judgment and he drove when he shouldn't have ... oh, the stories go on.

Needless to say that by when Tony called me at 11:10pm saying "did you call me?", it wasn't pretty. It is incredible how quickly anxiety turns to anger when you know that person is fine. And when the key turned in the lock 1/2 hour later?...well, I'll save that for another post.

I'm lucky to say that my husband and I really don't have much conflict in our relationship. But this event, my reaction to it, and the consequent "discussion" that Tony and I had, really showed me how critical communication is when you live with someone with type 1. What it all came down to was this: had Tony called me at some point in the evening to let me know that he wasn't going to be only "a couple of hours", but in fact was going to stay longer, all of this would have been averted. The fact that I didn't know, that I was left to worry about all of the possibilities, was what was unfair. It highlighted to me a couple of things, and I wonder if these would be the same for you all:

• It reminded me that living with type 1 is a partnership formed of mutual trust and mutual respect. I do my part by being attentive to Tony's needs around diabetes, by being supportive, by watching what I cook, what I shop for and bring into the house, by the choices we make every day. Tony's part (other than proactively trying to manage his diabetes the best he can, which is huge) is to check-in with me when he is out, especially if he is gone longer than expected. It is amazing how a quick "hey there" can ease my mind, and help me put my diabetes-anxiety back in its place. His being sensitive to this shows a great deal of respect for me and my feelings.
  
  
• It reminded me how important it is to communicate to Tony my needs around his diabetes. I forget sometimes that I have them too! In this case, I had never really shared how important it is for me to have that check-in with him, especially in certain cases like him being out on a stormy night, a Saturday night where he was prone to lows, in a loud environment where he couldn't hear his phone. Had I communicated that to him ahead of time, in a "less heated" discussion, I think the message would have been better received. In the end Tony did listen, but it took us a while before either of us were open to hearing each others' needs. I think we could have done this much more painlessly had we done it ahead of time.

But you know what? Lesson learned! Even for those of us who feel we "have it all under control" that diabetes-related conflict can still rear its ugly head when you least expect it. I think the key is maintaining respect for each other by being proactive about it - communicate your needs with your partner, and listen to theirs. And do it before you're in the "middle of it"... for both your sakes!