An endo, a gynecologist, and a patient walk into a bar …

Last Wednesday was that time again. Time for tapping my toe and biting my nails in the waiting room before my endo appointment.

And I had reason for concern this time. As I mentioned a while back, this new birth control pill has really thrown me for a loop. I was pretty sure that my A1c would be up from last time as a result of all of the daytime highs, overnight lows, and all-day cravings I’ve been experiencing.

But amazingly, my A1c was still 6.2. Absolutely no change.

Sidebar: How is that even possible? Sometimes I think these A1c’s are a joke. My prediction:  Someday we will find out that the A1c is just about as accurate as the BG readings we get from our meters. /Sidebar

But my endo was alarmed by the increase in my insulin needs after I started this new birth control pill. I think his concern is warranted given that I’ve jumped from somewhere around 35 units a day to an average of 45 units per day. And I’ve gained around seven pounds. In two months. Yikes.

I’d already called my gynecologist to ask for his advice, but the nurse, who did not believe me when I told her that the new pill was increasing my BGs, never called back. And this particular gynecologist was not exactly chomping at the bit to help solve my female troubles. In fact, he tried to encourage me to just keep with the status quo instead of trying to find something better. So my endo suggested a new gynecologist and recommended a “third generation or newer” birth control pill.

I have an appointment with this new gynecologist in a couple of weeks and in the meantime, I’ve gone back to my old pill. I can deal with the highs and the lows, but I can’t deal with the weight gain. And I can imagine my husband has had enough of my mood swings, too 🙂

Sigh. This is just another one of those things that we PWDs deal with that most people are blissfully ignorant of. All of our medications and therapies work together to make a semblance of a balanced system, but when we change just one aspect of the system, everything else starts to fall apart, too. And if you don’t have a good team of experts to support you, things can get out of control fast.

I imagine that this is why my gynecologist did not want to embark down this new pill road. He would rather not deal with the trial and error, the ups and downs, and the rebuilding that will come along with the journey. He would rather just do pap smears and write prescriptions. He does not want to be bothered with a “difficult” patient. Why can’t I just settle for “good enough?”

I’ve asked myself that same question many times. Why can’t I just be content with kidney-damaging highs the week before my period and debilitating lows the week of my period? Why can’t I just deal with the cramps, fatigue, moodiness, and bloating? The headaches and heavy bleeding? The backache and swelling?

And then I realize what a ridiculous idea that is. Why should anyone deal with this type of pain and suffering? I realize that this is not exactly a critical medical need. It’s more of a quality of life issue. But don’t I deserve to live the best life possible? I’ve lived with this mess for a long time because it was just too much work to try to fix it. The doctors were not exactly beating down my door to sign up for this challenge, and I didn’t really want to throw another variable into the mix when we were thinking about have a baby. But it’s been over a decade since I worked with a doctor to resolve my “female” troubles. A lot has changed since then. And I deserve better. I deserve more than two good weeks a month. I’m spending half of my life in discomfort or pain!

So I decided it was time to make a change. The trick now is to find a doctor who is willing to come along for the ride.

Disordered?

I read Lee Ann’s post today about National Eating Disorders Awareness Week and it stuck with me. Not because I’ve experienced diabulimia, but because, even though I’ve not, I can still relate to her comments and experiences.

And, like  Lee Ann, I have often struggled to put into words my complex relationship with food, exercise, and insulin. How do you explain a behavior that is clearly detrimental to your health, but so wrapped up in emotions and memories that you do it anyway?

You see, when you grow up with a constant focus on food, your ideas about it become warped. You learn early to see the two very different sides of food. To treasure it as a sarced gift, and to despise it as an enemy. An ice cream cone can be the reward for a hard-earned 82, the punishment for a foolish 23, or the reason for a disappointing 265.

My mom (also a type 1 diabetic) did her best to allow me to enjoy activities that revolved around food. She learned early on how to use regular insulin to cover an extra treat. But I was still taking shots then, so the treats had to coincide with a regularly scheduled injection or meal.

When we had holiday parties at school, I was allowed to choose three pieces of candy to enjoy with my classmates. The rest was packed carefully in my valentine box or my Easter basket so that I could enjoy it later at home. We tested and corrected for the treats before dinner. At Halloween, I trick-or-treated with the best of them and brought home a large selection of goodies. My cousins and friends would devour most of their loot right there on the spot, but I would have three pieces and save the rest. I was allowed three pieces every night after dinner until the candy was so stale I had no choice but to throw it away.

School lunches were always a struggle and I spent many a lunch with my Cabbage Patch Kids lunchbox, gazing with envy at the trays of my friends and classmates. Oh how I wanted chocolate milk, instant mashed potatoes, and canned corn. The food messages I learned in those early school days are burned in my brain. To this day, I can’t bring myself to eat mashed potatoes with corn, breaded meat on a bun, or canned fruit in syrup.

So even at a young age I was learning about rationing food and choosing my treats carefully. I can remember lining up my skittles by color and forcing myself to eat them one at a time so that the experience would last. I ate them in order from least favorite to most favorite: all of the green ones, then the yellow ones, and so on until I reached the best flavor: grape. This habit stems from a suggestion from my grandma one morning over my oatmeal. After she poured the carefully measured ½ tablespoon of maple syrup onto the center of my oatmeal, she suggested that I eat around the edges, working into the center of the bowl to save the best part for last. I took that one and ran with it. I saved the best for last with everything from breakfast to dinner. When I have a choice, I still eat the foods on my plate one at time, starting with my least favorite and ending with my most favorite. And I still divvy up my skittles, jelly beans, and gummy candies by color if given the chance.

In middle school, I learned that if I wanted to eat something extra, I could exercise to burn it off. So I would ride the exercise bike for an hour, or run up and down the steps until I had “earned” a popsicle.

As a teenager, when I was chunkier and stockier than the other girls in my class, I struggled with body image. My doctors said I was healthy, but I was not tall and lanky like my friends. My mom mentioned to me once that the only way to lose weight is to take less insulin. I never omitted the insulin I needed to cover my food, though. I was too scared of the consequences. Instead, I starved myself: no breakfast, a juice box for lunch, and a light dinner. Of course, I couldn’t survive for long on this kind of a diet, and after months of “success”, I would give in to the cravings and binge on pizza or fast food with my girlfriends.

My exercise obsession continued through high school. I played soccer, swam with the swim team, and generally tried to stay active. During one summer, I worked at a day camp chasing kids all day, practiced with the swim team at noon, and worked out with the soccer team in the evenings. All summer. And I existed, most of the time, on that noontime juice box and a light dinner after soccer practice.

In college, my obsession turned to foods and their values. I embraced carb-counting, but I still also relied on the old exchange program. Always counting and weighing and measuring. A half cup of this. 8 ounces of that. How badly did I want that cookie? It was worth two slices of bread. Or two servings of potato chips. Or a serving of ice cream. Was I willing to give up my afternoon snack? To take an extra shot? To run around the block?

It never crossed my mind that these behaviors might be unnatural, or even dangerous. In fact, I was proud of my accomplishments and my ability to “control” my weight. And no doctor ever asked me about my eating habits or feelings about food. As long as my A1cs where good, I was given a clean bill of health and sent on my way.

Today I like to think that my relationship with food is much more balanced. I do not starve. I eat when I am hungry. But I still struggle with my internal dietician. How bad do I want that order of French fries? Could I settle for the side salad? Just this once? I will pour over a menu in a restaurant, considering all of my options. And if I’m trying out a new place, I might scour the restaurant’s webpage first so that I can compare calories and carbs and fat ahead of time. I am typically the last to order at the table and, at home, deciding what to make for dinner is often an epic dilemma.

And when I finally do decide to have the fries, I blame myself for making a bad decision. If my BG is high afterwards, I tell myself that I deserve it. It’s my fault. I made a bad choice. I should have done better.

I’m on better terms with my body now, too, but it is a daily struggle. I am always trying, but it’s hard. Because this damned disease has done weird things to my metabolism, my appetite, and my body shape. It is hard to keep your weight down when you are always hungry. Add to that the fact that I take exorbitant amounts of insulin to cover the food that I eat, and weight loss and a sense of balance are an uphill battle.

I’ve talked to doctors, dietitians, and therapists about these issues over the years, but none of them really get it. We never really dig into the issue, just skim over the top. There seems to be little interest in helping the diabetic with this ongoing issue. When will the medical community recognize the mental effects of this disease on our ability to maintain a healthy perspective on food and body? And, as patients, what would we ask them to do to help us?

On returning to work

So this post is pretty late, but better late than never, right? I have had mixed emotions about returning to work. In fact, they started before I even left for maternity leave. With all of the stresses of a diabetic pregnancy and full-time work, I was just completely exhausted by the time those nine months were up. I was so ready to get out of the office.

And I don’t really write about this much here, but my job is not as challenging or rewarding as I would like it to be. In fact, the company culture is downright stifling. I am miserable a good deal of the time. The stress of my struggle to fit into a role that is not at all like me leaves me with spiking BGs, stress-induced hunger, and a general sense of dismay.

As a reminder, I am a technical writer, and don’t get me wrong – I actually love my field. I have this weird passion for bringing structure and order to chaos, especially highly technical chaos. It makes my day when I’m able to reorder a collection of confusing sentences and make a useful piece of information. And it’s even more rewarding when someone is able to use this new piece of information to improve their life, or even just to complete a task faster and with less frustration. I’m sure it sounds fairly lame to people who enjoy more exciting occupations, but it is the perfect fit for me.

So it was with some trepidation that I returned to work after four months of leave. It was September, and I worked three days a week. And while those first few days away from Lukas were just pure torture, I have to admit that it was nice to be back in an environment with adults again. And the three-days-a-week gig still gave me the majority of my week at home with my sweetie.

But the return was not without its stresses, including the fact that my boss had promoted my (so-called temporary) replacement above me while I was out on full-time leave. Into a position that he had earmarked for me. And he did not even have the decency to tell me about it (I found out quite by accident from a co-worker).

Luckily my new boss (aka, the temporary replacement that I personally chose and trained) is a great guy. And it’s not his fault that he was placed in such a difficult position, so I try not to let this mess interfere with our working relationship. But it really sucks, you know?

At the first of the year, I was supposed to move back into a full-time role, but my heart just wasn’t in it. Still feeling slighted by my previous boss and still dealing with the stifling corporate culture, I decided it wasn’t worth it. My husband recently started a new, higher-paying job, so I no longer had a financial reason to return full-time. So instead, I negotiated for another part-time schedule. I now work four days a week. I’ve lost some benefits as a result of this change, but I still get my insurance benefits and a pro-rated vacation schedule. And I get Lukas all to myself on Fridays.

It’s not exactly my dream job, but when I get home at night, and my little guy smiles up at me, all of that work drama just melts away. I’m still keeping my eyes open for “greener pastures”, but for now this gig is paying the bills and providing me with a little extra time for my little one. It could be a whole lot worse.

The remnants

I’ve been having one of those nights now for about a week. You see, I changed my birth control pill about a month ago, and this has wreaked havoc on my BGs. The ebb and flow of insulin resistance that this new balance of hormones has brought to my life, frankly, sucks. By day, I am living on temporary basal rates of 150% to 200%. And by night, it’s just me and the late night talk shows, stalking low blood sugars with juice, cereal, and cookies.

I was dreaming that my company had restructured and I’d been moved from my home in the development department to a new home in the marketing department. And my new officemates, marketing and sales people, could not understand what I did or how I brought value to the company. So I kept trying to explain why technical writing is important, and what, exactly, I did all day. And they kept saying, “Oh, so you do this?” and I would say, “No, it’s more like this.” And back and forth we went. And the more frustrated I became, the harder it became to explain my worth to them. I woke up sweating, near tears, and dizzy. This low was hard to identify because I have been struggling with similar issues at work. Feeling underappreciated and misunderstood, and struggling to find some like-minded co-workers. But when I finally got that meter case open and the strip in the meter, it turned out that my sugar was down to 35. Wow.

A glass of juice and a bowl of raisin bran later, I was creeping up on 70, so I thought it was safe to turn out the light. But the BG fairies were not in agreement. An hour later I was 52. Another glass of juice, and I was back in bed.

Another hour later and Lukas was crying. He was teething and needed some comfort. I did another test for good measure, and saw a 56 winking back at me. Son of a bitch. I slurped down another glass of juice and set a temp basal of 0% for two hours before running up stairs to comfort Lukas, juice sloshing uncomfortably at the top of my stomach.

Back in bed, I couldn’t believe it when the alarm went off just two hours later. And wouldn’t you know it, my sugar was 187. I corrected and set a temp basal of 200% because I knew that those morning hormones were going to send this number through the roof. Tired, and fighting a low-induced hangover, I tried to swallow that sticky, low aftertaste from my mouth. I jumped in the shower to get ready for another day of roller coasters.

But it’s not until I was on my way out of the house, in the kitchen, that I really stopped and thought about how trying these last couple of nights have been. I’d been on autopilot, testing and treating and testing again. It wasn’t until I saw the remnants that I realize just what I’d been through: an open box of raisin bran spilled on the counter. A trail of juice on the floor from the refrigerator to the cupboard (where I must have spilled it in my 35 mg/dL stupor.) Rings of milk on the counter from the measuring cup where I (tried to) carefully measure out a cup for my raisin bran. Cookie crumbs and plastic wrappers piled high near the sink (where did those come from? I don’t even remember eating those!)

I sighed, grabbed my laptop, and headed out the door. Maybe today will be better.