Daily Diabetes Mantra

Forest Sunrise

At some point each day, I’ve said these words to myself. This has become my diabetes daily mantra.

1. I am not a number.

Diabetes is a numbers game. The house always wins because the cards are stacked. We are often judged, (often wrongly, by the way), on how well we are managing our diabetes by numbers. “Your blood sugar is 256? What did you eat?” “Why are are 46 right now?” “Your A1C is higher than it should be.”

I am more than a single number. More than a series of numbers. External influences can chip away at the concept of perfection and leave me frustrated. Stress? Illness? Delayed gastric emptying? Too much exercise? Not enough food? Too much food? Gah. That’s called living, everyone.

The numbers that I see on my blood glucose meter are not me; they’re signposts to help me get to where I need to go. The numbers are just points on a graph. Those numbers are a destination, a starting point, and not me.

(Ever see The Prisoner? It was a British show in the 60s that was weird and wonderful at the same time. Every time I say this to myself, I channel this quote from the main character. He says: “I am not a number. I am a free man.” )

2. It’s a new day. 

The day may start at 2am with a hypoglycemic reaction and a blaring Dexcom or a high blood sugar and two glasses of water, but I have the opportunity to mold the day into something new. Yes, yesterday may have been fraught with a roller coaster graph on my Dexcom G4 (or problems with seeing that graph) and today may be the same (or completely different!), but I’m going to make the decision to McGuyver it into something that I can live with.

3. I’m not the only one.

There are millions of people who do the daily dance with diabetes (tango? lambada? electric slide?) and there is comfort knowing that I’m not alone. Need questions answered? Medical team. Need an “I get it”? DOC. Need a hug? Family and friends. Or hell, I can wrap my arms around myself if no one’s in the vicinity.

I also need to remind myself that my family is also dancing with me. (Sometimes The Kid provides a little levity when she dances.) My diabetes impacts those around me, so I’m not the only one who has this burden. I have to show my love and appreciation for them and what they live with, too.

4. I can’t undo the past.

After 30 years, I’ve made my mistakes – and not just with diabetes. I can wail and rage all I want about the high A1Cs in my teens and diabulimia and what it may have done to my health, but those years are etched in stone (and my body). All I can do is focus on what I can do today to mitigate the damage by living well from this point forward. It’s OK to remember those times as cautionary tales, but the present is where I need to be so that I can have a future.

5. Take a moment and breathe. 

I live at breakneck speed in my head, even though I may be sitting on the couch. If I don’t slow down and take a moment to breathe, I will not be able to think about what I need to do with clarity. Mindfulness is a powerful tool that may take years to master, but only a few minutes to start. Focusing on breathing in and breathing out helps to calm me down and center me, so that I can head off in breakneck speed again – but with a seatbelt and airbags.

What is your diabetes mantra? 

Let's Talk About Sex…

Yes, I’m going here. We are going to talk about it today and I’m going to bare my soul (not other parts of my body…this is not one of those websites) to give you my take on diabetes and sex. However, before we do…

Dear Dad,

There is a very funny Daily Show on right now, followed by a riveting documentary on some topic I am absolutely sure will be exactly what you need to watch right now. Or read a book. Something else.  Because…nothing to see here. Move along. Come back tomorrow.**

BedCouple of things straight up…

  • I’m a chick, so I can only give you a female perspective on this. I’d love to see a male diabetic take on the same subject for the other gender’s point of view.
  • I wasn’t a virgin when I got married. (Neither the first time nor the second time.) I’ve had sex with men who were not my husband(s) before I was married. If you’re offended by that, please don’t read on. You’ll just get all huffy and indignant and I’m not about ruining your day. You have your views and I have mine on this topic. I respect your views. Respect mine.
  • I like sex. A lot. When it’s with someone who makes you laugh out of the bedroom (and sometimes in it), it’s even better. You and I are not going to make love (again, not this kind of website), but I do plan on making you laugh in this post.

Still with me? Good. Dim the lights, turn up the music, and let’s get it on…. (Hat tip to Barry White…)

Safe Sex…

I had unsafe sex in the 90s. No, no, no. Not that kind of unsafe sex! Safe sex means something completely different to diabetics. It means checking your blood sugar before you get swept up in the moment. If the earth moves under your feet, it better be because you are having a good time and not because you’re shaking from a low.

Pre-insulin pump and pre-Humalog days were a little easier for me to get away with “unsafe sex”, because my blood sugars didn’t crash quite so quickly, but I was caught with my pants down (you may roll your eyes) on more than one occasion. Nothing says buzzkill like saying: “Hey, you know what you could do right now that would make me scream with ecstasy? Get me a big glass of juice.”

Nowadays, checking and an occasional carb loading is part of the less than sexy part of foreplay I must partake in. So, remember kids. Always practice safe sex. Both kinds.

Spontaneity…

I laugh watching movies in which the lovers attack each other, ripping articles of clothing off with teeth, popping buttons, flinging each other around and going at it in crazy places. I’m honestly a little jealous, because these days, for a diabetic wearing an insulin pump and a CGM, it’s more like:

“Hold on. Let me disconnect this… Wait. Don’t pull on that. Tubing. Ow. Where’s my CGM? Careful. Don’t drop that. Shoot. Sorry, did the insertion set scrape you?”

You’re getting the picture. I have to plan for “spontaneous sex” now. I  long for my younger days (pre-pump), when spontaneous meant exactly that, but I do not long for the lack of control I had when it came to my blood sugar. It’s a trade-off, but one I’m willing to make so I can continue to have “not spontaneous” sex for a long time to come.

All That Sugar…

Whipped cream. Chocolate sauce. Strawberries. Honey.

How much do you dose for those when you’re not quite sure how much you’ll eat?

Everything Mickey Rourke fed Kim Basinger in this scene, except for the hot pepper, had sugar in it. Jeez.

(P.S. This was before Mickey Rourke looked like a bad medical experiment.)

Seven of Nine isn’t that sexy sometimes…

I have bumps and lumps and marks from years of injecting. Bruises show up from a bad insertion set. I don’t find them sexy. Gone are the days of proudly parading around in skimpy lingerie. Sex isn’t just about the physical act; it’s about feeling sexy, too.

I don’t think being a cyborg is enticing and it does impact how I see myself in another person’s eyes. (My husband may tell you otherwise, but this is about me and my perspective.) I hate dragging myself out of a blissful stupor to reattach myself to my pump and can’t ever just drift off to sleep curled up naked. Naked means not wearing anything. I’m always wearing a pump.

Control? Blood Glucose or Birth? Both…

The “Pill” was introduced to my body long before it became useful for it’s originally intended reason to prevent me from writhing in pain for days each month. I was on and off  it for years, changing dosages and types as new ones came on the market. It helped with the gut-wrenching menstrual cycles, but come to find out I was putting myself at high risk of stroke (I have a clotting disorder that wasn’t diagnosed until my late 30s). The docs now tell us that diabetes and oral contraceptives may not be the best mix if you’ve got a history of stroke/blood clots/clotting disorders in your family or if you’re over 35. So, next…

IUDs are also pretty much out. The risk of infection (thanks again, diabetes) is greater for us, so it’s not a great option.

The reproductive endocrinologist we saw wanted me to stop getting pregnant (and miscarrying) for a while, so it was frisbee (diaphragm) and foams and standing in the middle of the “family planning aisle” at CVS wondering when condoms started to come in bright colors. (Who the hell says: “Hey, honey? Neon pink or emerald green tonight?”) Truthfully, I was always a “can’t be too careful” sort of girl, so there was always a multiple barrier option being exercised in my youth. It didn’t mess with my blood sugars. That’s the only positive thing I can say about those types of birth control.

It’s complicated…

Even though your heart might be into it, your body may not be. I’m all for lots and lots of foreplay, and not just because it’s fun. For women, high blood sugars can make us less physically responsive, no matter how much we want it. Emily Post believes in hand-written thank you notes when you really feel strongly, so I think K-Y will be getting a perfectly penmanshipped “Merci!” on linen stationary soon. That stuff is liquid gold, but man, it is messy.

If I’ve had a nasty low, I don’t want to get nasty. I want to sleep it off. It takes a toll in the bedroom…or the couch…or the…. pick your favorite place… and I hate when my blood sugars go crazy, because it usually means I can’t. Diabetes can mess with your head – and your body – and your sex life. Don’t take it just from me; here’s a study. And this study. And high blood sugars? While it hasn’t happened in a very long while to me, diabetics are prone and primed for yeast infections. It makes getting lucky more like “get the hell away from me”.

This all being said, I know a lot of diabetics who have healthy and happy sex lives. I also know a lot of non-diabetics who don’t. Sex isn’t everything, but it sure is something. And I enjoy that “something”, even though my diabetes gives me that extra “something something” I don’t really want. Sex with diabetes is good, but I can only imagine that sex without diabetes is better.

See, told you that I wouldn’t bare my body, but you do get a little insight into what goes through my head. (Not everything. It’s not that kind of website.)

** When I was a senior in high school, I had a midnight curfew. Midnight. Not five minutes later. Midnight. But I could have friends over. One night, I brought a friend over to hang out after midnight. Just so happened to be a boy. I yelled up to my parents that the guy and I would be hanging out in my room. The story goes that my dad said to my stepmom:

“Do you think Christel’s still a virgin?”

Her answer:

“I don’t know. What time is it?”

Straight From The DUH Files…

My pump cartridge and my wedding ring.

Relationships are hard. 

Duh, says everyone. Millions Billions  A gazillion dollars have been spent by humankind over thousands of years to find out what makes us click – or not. Poems, books, movies, therapy sessions, divorce courts, and Facebook are mostly  about relationships. If someone actually figured out the magic formula, the world wouldn’t know what to do with it. We’ve been conditioned that conflict is good –  in moderation.

Diabetes is hard. 

Duh, says… most of us. Some medical professionals and people not familiar with the disease have this idea that managing diabetes is a couple of shots and watch what you eat and why aren’t your blood sugars perfect? You must be cheating. Managing diabetes is complex, convoluted, and confusing (Look! Alliteration!), even with better technology and better drugs and the ability to share and learn from each other. You know the old adage: “Insanity is doing the same thing over and over again, expecting different results.”? When it comes to diabetes, the adage becomes: “Insanity is doing the same thing over and over again, expecting the same results.”

Relationships and diabetes together are…say it with me…hard. 

I didn’t need a study to tell me that, but here it is, straight from the annals of Diabetes Care, published for their March edition: Personal and Relationship Challenges of Adults With Type 1 Diabetes . The researchers did a small study, using focus groups split into two categories: the Type 1s and their partners, asking pertinent questions about their relationships. Know what they’ve discovered?

Four main domains were identified: 1) impact of diabetes on the relationship, including level of partner involvement, emotional impact of diabetes on the relationship, and concerns about child-rearing; 2) understanding the impact of hypoglycemia; 3) stress of potential complications; and 4) benefits of technology. Themes suggest that, although partner involvement varies (very little to significant), there exists significant anxiety about hypoglycemia and future complications and sources of conflict that may increase relationship stress. Partner support is highly valued, and technology has a positive influence.

Again, I say: Duh.

I love the little quip about “…there exists significant anxiety about hypoglycemia and future complications and sources of conflict that may increase relationship stress.” I know this. I live this.

I see the worry lines in John’s forehead when he watches me struggle to come up from a low. Every day, we engage in some discussion about blood sugars or what I’ve eaten or some aspect of diabetes. He has been incredibly brave when I’ve been a coward, helping me choose the decisions that are best for our family. It is tiring to me, so I can only imagine how tiring it is to the people around me. Or if I didn’t have a supportive husband but a Diabetes Police new recruit. But you know what’s worse?

I once had a relationship with someone who just didn’t care at all. Despite being a medical professional, he chose to act as if it was just my disease alone to handle. No encouragement for the good days and no comfort for the bad days. Begrudgingly helping when I was sick or needing assistance when I was in severe hypoglycemia. I’m surprised the relationship lasted as long as it did.

So, we already knew what researchers have told us in this article. What do we do about it?

  • Talk about your feelings and fears, if not with your spouse, then with someone who can give constructive steps to deal with the issues in your relationship (and your relationship with diabetes). Not talking about it won’t help either of you feel any better. And you want to feel better, right?
  • Friends for Life, the annual conference in Orlando  that used to be just for Type 1 kids and their families is now offering an Adult Type 1 track with some interesting classes. Dr. Bill Polonsky will lead a Couples Discussion Group, while Jill Weissberg-Benchell & Kerri Sparling offers up a Dating and Diabetes seminar and Diana Naranjo will facilitate a Significant Others Discussion Group. Come hang out with the rest of us and get some insight as to how other couples handle diabetes and relationships.
  • Read more about the impact diabetes plays in relationships at dlife.com  – lots of great articles from people you already know.
  • Personal experience: The worst time to talk about diabetes is when a Type 1 is having a low. When John asks: “Why do you think you’re low?”, it results in me giggling, telling him that I’m not wearing socks, or growling angrily. Sometimes all three at once. Talking about diabetes after the diabetic has come up from a low and when the effects of adrenalin and cortisol coursing through the system can result in a coherent, cogent conversation (Look! Alliteration again!) and probably not a discussion about socks.

I’m married to my diabetes. No option for divorce or at this point, even a trial separation. My husband still married me, knowing this. I love him all the more for that. Even on the tough days.

If you take nothing else away from this, remember:

Relationships are hard.

Diabetes is hard. 

I say duh a lot. 

Got suggestions on dealing with diabetes + a significant other? Resources to add? Bring it on! 

We're A Greedy Bunch, Aren't We?

We want. And want. And want.

Better accuracy. Cheaper supplies. Closed loop. Artificial pancreas. Easier diagnostic tools. Doctors who get the “whole picture” and not just numbers. More awareness of the differences between Type 1 and Type 2. More awareness of diabetes overall. A gag order imposed on the Diabetes Police. No complications. No deaths from diabetes. A cure. Heck, fast acting glucose flavor options that don’t make you gag would be nice.

We’re a greedy bunch, aren’t we?

We deserve all of these things. (Some things more than others…) We don’t just idly sit back and wait for them to come to us. We fight for understanding, for support, for encouragement, for community. Some brave souls fight long after their family members have lost their own lives.

I’ve always believed that nothing worth having ever comes easy, but sometimes I wish it wouldn’t be so hard. The financial aspect of diabetes alone is enough to drive one crazy. (And in my case, it’s a short drive.) According to the latest statistics updated yesterday (Did they know I was coming? They could have baked a cake!) from the American Diabetes Association, $245 billion dollars was spent on diabetes in 2012 between direct costs and lost productivity. 25.8 million people in the United States have diabetes (T1 and T2) from the 2011 stats… so, with my mediocre math skills, that comes down to…

Oh, forget that. I do enough math counting carbs and basal adjustments. It’s a lot. And I’m sure that’s not taking into consideration the cost of trying to eat healthier. (Hat tip to Kerri for the great post about food costs.) The cost of parents driving to and from schools to talk about the 504 plans for their children or to check a blood sugar or give an injection or change an insertion set. It’s not taking into consideration that we are bound to the ideal that we should take good care of ourselves now so we don’t burden our families years from now because we’re not eligible for long term care insurance. The costs of choosing between a needle that hurts a lot and a needle that hurts less. Ripping out an insertion set after two days hours because it’s occluded. The cost of choosing between accuracy and expensive and not so accurate but you’ll be able to buy other supplies.

We’re greedy. It’s not just dollars. It’s sense. (Yes, I know it’s actually cents. Work with me here, please.)

A sense of feeling good. Healthy. Not looking over our shoulders for the ever present creep of a low or the sledgehammer of a high. Not being second guessed by our medical team or the people we love or… by absolute strangers who think they know all about diabetes because they watched a Lifetime movie or Steel Magnolias or (insert grim face here) a relative.who.is.now.dead. Depression runs amok amongst us. Fact.  (If you want to get depressed, feel free to read this scholarly account.) I don’t know about you, but when I’m depressed, I am less likely to fight for what I need. I’ll take what I can get.

Cue the DOC. I definitely got what I wanted when it comes to that. A group of people who come from all walks of life, with different opinions and ideas, and varying levels of potty mouth to keep us all going forward. One person alone can make an impact, groups can make an impact, but oh… the DOC. Be still my heart.

For me, my DOC showed up in the mid 1990s with my discovery of a wonderful man…. David Mendosa. Know him? If you do, then you understand. If you don’t, then take a gander at “The List”. Put it this way, David was my gateway drug when I was jonesing for knowledge and feeling very alone. (Truth? I did not go to “diabetes camps”. I didn’t know a lot of diabetics. Like, I could count them on less than five fingers.) The Insulin Pump Forum helped me make one of the most important decisions of my life in 1999. I couldn’t have take a giant leap forward without their insights and support.

These days? Swing a cat. (A virtual cat, please. No kitties should be harmed in the name of this post.) Bam said the lady. Blogs. Groups. Conferences. Chats. A single phone call from the ER to one T1 friend connected me to a woman in Texas who had the same issues. Bam.

I found out that you want what I want. We want. And want. And want. Together.

Greedy? You bet. And we won’t stop until we get it.

(But until then… suggestions for fast glucose options that won’t break open in the bottom of a purse or glop everywhere and doesn’t taste mindnumbingly bad? I’m all ears. I’m certainly not all pancreas, but I am all ears.)