deflated

It's one of those days. In reality, it's been one of those weeks.

I'm tired. I'm tired of doctors, nurses, miscommunications, noncommunications. I'm tired of logging sugars, and meals. I'm tired of feeling not *listened* to.

I'm tired of diabetes.

I'm tired of basing pregnancy decisions around diabetes. I want to choose what is best for me, and what is best for my baby, because I've thought it through and the decisions fulfill a vision that I see for my daughter's birth. I don't want diabetes to play any part in that moment.

But it does. Of course it does. It always does. It's always there.

There are so many examples of this swirling around in my head right now. The first several occurred during one of my biweekly appointments with the endo last week. I saw a different endo this week - who am I kidding? The lack of any kind of continuity of care is my major issue with this clinic. I've never seen the same resident twice, and I rarely see the attending OB at all. Once I get used to a specific endo doc and what their expectations are, I see someone else, who has a completely different set of goals. Shouldn't the goals be clinic wide, so as not to confuse the patient this way?

Last week I was the perfect patient. Last week, my blood sugars were *too good*. As in, "I'm ok with you running a little higher so you don't go low."

This week, the endo pointed out that I'm not meeting the after meal goals. The ones I've NEVER been able to meet, even if I survive on salad alone. The ones that are the same for type 1's, type 2's, and gestationals. The exact numbers that a week ago were "just fine and not negatively affecting my baby at all." My fasting numbers were too high. Not out of range high, just not in the 90-100 area they want.

Ok. I can work with that. I like constructive criticism, especially if it helps me get tighter control. Just quit giving me different stories all the time, ok? Pick a goal and stick with it.

Not long after that, as I was leaving the clinic, another nurse from fetal echocardiography called me to remind me of my echo the next day. This test was basically a really detailed ultrasound of the baby's heart. She asked me a bunch of questions over the phone, so that I "didn't have to fill out all the paperwork the next day". After the basic type questions, she started asking me about my blood sugar control. "Well, my A1C is currently 5.9," I said, rather proudly. "Oh." She replied. "Well, that's...okaaaayyyy...... what do your fasting numbers look like?" So I, rather instantly deflated, recounted my earlier visit and the corrections made to help my fasting numbers fall into the range that new endo wanted them in.

And... then the litany began. "This is pretty uncontrolled," the nurse said to me. (PS, nothing sets me off quicker than suggesting that I'm "uncontrolled". It's basically saying to me that after all my hard work, you believe that I just don't care enough.) "With blood sugars like these, your baby's heart could have problems. We're basically looking for heart deformities that occur early on, as well as thickening in the wall of the heart caused by high blood sugar. Also, with sugars like these, the cardiologist will probably not be able to see everything she needs to see, and you'll most likely have to come back for another echo later on in the pregnancy."

Needless to say, I was in tears by the time I hung up the phone. This woman was (the way I heard it)saying that I was causing damage to my child's heart because I was ignoring tight control. Guilt trip much? First, I called my husband, who, as usual, can look at a situation logically and talk some sense into me.

"Are you sure she's not using some textbook guidelines that aren't really possible in real life?" he asked. "Or lumping you in with type 2/gestationals whose bodies work differently?"

Even so, what I didn't understand - how could she say these things to me when everyone in the endo/ob clinic tell me that I'm doing fine, aside from tweaks here and there? What new set of goals and expectations does SHE have for me? Why am I not clearly being told exactly what the expectations are? I'm ready to have a mental breakdown because they seem to change weekly.

I ended up calling the OB clinic and tearfully explaining to them what the echo nurse had told me. I explained that I was just getting too many mixed messages, and I needed ONE set of goals that I could feel confident in for me and the health of my child.

The OB clinic was pretty ticked at the echo nurse. First of all, apparently a 5.9 A1C means that your risk for fetal heart damage isn't ANY different than ANYONE ELSE'S. Secondly, even with tweaking, I had some of the best looking numbers in the clinic - and further more, the echo nurse had no right to even be asking me those questions. Endo and OB takes care of blood sugars. I'm where they want me. Her scare tactics were completely unwarranted and unbased.

In the meantime, this elevated a test I wasn't super concerned about to a major source of stress. Thanks a lot, Nurse Ratchet. I'm sure the stress was great for my baby. (My "positive pregnancy affirmations" went on loop on the car radio for awhile.)

The next day, after the echo, I have never wanted to fling test results in someone's face the way I wanted to do to her. The cardiologist found no evidence of any heart deformities, issues, or thickening. I heard her say the word "perfect" somewhere in there, too. And she said there was absolutely no need for me to come back later - she had seen everything she needed to see.

I refrained, but I really wanted to scream at the nurse that any damage done was due to her complete lies, rather than my so called "uncontrolled" blood sugars. Honestly, I wonder if she KNOWS what she is doing to people mentally? I know that scare tactics can help some people get back on track, but to use that method you really have to know your audience. Instead, she nearly caused me a psychotic break while I guilted myself into imagining all the things I personally had damaged in my baby's fragile, developing body.

Sigh. Although I guess all's well that end's well.... But the whole thing left me with such a bad taste in my mouth. People who are supposed to know what they are talking about don't. And no matter what, you can't change these folk's judgements and opinions.

This week's project was the "birth plan". Something that naturally should focus on things we want during the birth itself. It, to, turned unfairly d-heavy. First of all, I plan on trying for a natural birth. Not because I have anything against epidurals. Yup, you guessed it. It's because of that stupid disease again. Basically, diabetics have an absurdly high rate of C-sections. Why? Well, lots of reasons. Often we aren't allowed to go full term and are induced. Induction leads to more C-sections. Basically, I believe that a doctor is more prone to freaking out with any high risk patient, and jumps on any excuse to demand a C-section, whether or not it is really medically warranted. Anyhoo, basically I want to avoid ANYTHING that could cause me to have a C-section. So.. that leaves.. au naturel. So in some weird way, choosing a method other than that recommended for most diabetics is still allowing diabetes to guide the decision.

I want to be in control of myself, my birth, my baby, and my diabetes. I am afraid (and rightly so) of nurses ability to care for type 1's, their knowledge of type 1, and their reliance on flow sheets and blanket orders for "sliding scale" insulin regimens that DO NOT WORK for me as an individual. (And this is coming from a nurse. I hate to be that way, but it's true.) They generally don't trust that I know what works for me and my body, although I have kept up with this for 14 years. So I wrote in the plan that I wanted to test my own blood sugar, with my own meter, control my blood sugar during labor using my pump and CGM, and not be hooked to insulin and glucose drips. I don't even want an IV. I don't want them giving my child glucose solution for a low blood sugar at birth. I don't want to be forced into an induction, or continuous fetal monitoring.

And my doula - who I thought would be completely down with the self care empowerment thing - gently told me that all these things may not be acceptable for me as a high risk patient.

Deflated again.

How do I come to terms with my visions for a "moment", an experience of this great thing, and what the doctors insist on? And don't tell me that it doesn't matter how it happens, as long as she arrives safely. I know all that already. That doesn't mean I have to give all my choices away. No matter what happens that day, I just for *once* want diabetes to be in the background.

d news

So.. more odds and ends, it seems. Maybe that is just how my head is working these days.

We had a very long set of appointments about a week ago. Endo, OB, ultrasound, doula... I figure if you gotta drive as far as we do, you might as well pack it all in.

First the exciting things:

We are having a baby girl!

I'm totally psyched. I'm thrilled for frills and ruffles and girly clothes and a pretty birdie themed nursery (Thanks, pottery barn kids, for that new obsession). I love knowing that she's a she - she has a name, a little identity.

Even better - everything looks good, healthy, and normal. We saw five fingers, tiny toes, healthy kidneys, and a beautiful, four-chambered pumping heart. Next week we have a more detailed fetal echocardiogram that will take a closer look at her heart, and I'll keep my fingers crossed til then. But right now, she's a perfect teeny 9 ounces with the cutest little upturned nose. She's absolutely gorgeous.

And now confusing things -

During my endo appointment, I got some news I never expected to hear. "I wouldn't mind seeing your A1C a little higher," my doctor said thoughtfully.

Uh...... WHAT?

I mean, don't you want the lowest A1C possible? Hasn't that been what you've been telling me from day one? That if my A1C is in the "basically normal" range, my daughter has less likelihood of having congenital heart problems, malformations, kidney problems, being too big, or having blood sugar problems of her own after birth.. right?

And didn't I work my ass off for that 5.9 number?

My doctor explained that now that I was in my second trimester, all my baby's vital organs are formed. And things look good. Therefor, they are less concerned with malformations now. Now I get ultrasounds every two weeks, basically to carefully monitor the baby's size to make sure she's not getting too big. And, according to my doc, that is unlikely as long as my A1C stays under 6.6. "So you have some wiggle room," he said. And, although most type 1's are plagued with lows their first trimester, I had to be the odd ball, naturally. My insulin needs went up, up, up my first trimester and I fought a lot of highs. Now, in my second trimester, when hormones from the placenta normally set in to cause insulin resistance, I seem to be spending a lot of my time stuffing my face trying to get out of the 60's. So basically my doctor see it as a safety issue - if I can increase my numbers ever so slightly, I can still protect my baby without worrying about things like car accidents, or falling down stairs. Still, with a disease where all you ever hear is "lower! lower! lower!" I had a hard time wrapping my brain around this.

One the plus side, my doc did call my a "model patient". Yay! I'm a person who really relies on positive feedback, so after weeks of logging, logging, logging, and only ever hearing "yup, you're doing fine" - this was very important in motivating me to just keep on keeping on.

In other pregnancy notes -

I think I've entered that awkward pregnancy stage where it's a little hard to feel good about yourself. I don't care about the increasing numbers on the scale. I just want to be like all my pregnant friends- cute, skinny everywhere but their taut little bellies, and obviously, well, pregnant. Instead, my boobs each have their own zipcodes, and my growing belly could honestly be mistaken for a beer gut. I'm halfway through my pregnancy, and most people don't realize I'm pregnant. And yes, this is all pure vanity. I completely recognize that.

And while I'm whining, can I take a moment to complain about maternity clothes? You drop a friggin fortune on clothes you have to have because you can't fit into anything else and you are tired of wearing sweats, and you want, need to look and feel pretty again. Maternity clothes are expensive, you wear them for 6 months, and they are made RIDICULOUSLY cheaply. Pilling and stretching after one wash? Are you flippin kinnding me???? ok, rant over.

I still don't feel like I have any right to complain about ANYTHING. I have exactly what I have always wanted. All in all, I love being pregnant. I love feeling my baby kick. I love preparing for her arrival. And I am willing to wear a paper bag for 9 months if that's what it takes. Beating down that vain streak in me has been a little tough, though. Combating it relies heavily on listening to a "positive pregnancy affirmations" CD a friend loaned me. It's basically just positive statements you repeat to yourself to remove your negative mindtalk. Sounds like a lot of new-agey mumbo jumbo, but I find statements like "My pregnant body is radiantly beautiful" pretty helpful certain days. My other favorite statement on the CD is "My body is in perfect health - for me and my baby." It's hard to describe in writing, but there is a very important pause in the statement - "My body is in perfect health - FOR ME." My body may not be PERFECT, but THIS is what "perfect health" looks like for me, in this situation right here and now. And perfect health is not the same for me as it is for anyone else. I find that statement so empowering.