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.