I've blogged about my Endo frustrations before. It wears me down, leaves me feeling almost helpless... not a feeling I'm used to. So at my last OB appointment, my doctor and I discussed my going to a different clinic, one that I've used in the past. Today was my first appointment with them, and it was both a huge improvement as well as a slight disappointment.
What I loved was the knowledge about insulin pumps. The prior Endo made me write my blood sugars out by hand on this terrible sheet he'd come up with. I'd asked him why I couldn't just download my pump in one of my first appointments: he told me that there was too much information and he couldn't see the forest for the trees. Umm, okaaay then... I used his sheet without complaint. This morning I brought my log book, unsure about the procedure at this new clinic. One if the first things that the CDE did was download my pump and print off all the reports. Then we spent almost an hour and a half reviewing the data. At one point, we talked about ketones and the CDE was shocked to hear that I was still using urine test strips - she proceeded to give me a blood ketone meter for free and reviewed with me the pregnancy procedures in event of ketones. She gave me a thorough check-up: my feet were poked and prodded, it was discovered that I have a decent case of pregnancy-induced edema, and I even peed in a cup!
Then it was the dietician. One of the things that I didn't have a complaint about at the old clinic was the Dietician - she was helpful and supportive. So was her counterpart today. She gave me a list of very cool apps and websites that I could use for carb counting and estimation and I left her office maintaining the positive feelings the CDE had inspired.
And then it was the Endo. One of the first things she told me was that, because they operate out of a different hospital and are under a different health authority than the one I'm delivering at, they might not be able to see me. I was crushed, I won't lie. I hid it well but it took an immense amount of will power to stop myself from crying. The previous 3 hours had been so helpful, so supportive, and now I was being told that I might not be allowed to continue receiving that help.
It makes me shake my head, even right this moment, to think that I may have to accept what I consider sub-standard diabetes care because of where I'm delivering. Do I not pay the taxes that support our healthcare system?? Am I not entitled to the very best resources available for a person in my condition with the technology that I have????
We had a few hitches after that; she wanted to know why I was having difficulties with the Endo/clinic, and I explained to her that I didn't feel that they had the tools and resources necessary to help ME. I let her know that I had discussed with the prior Endo my belief that we didn't communicate well, that we weren't an effective team, and told her about how when I'd gone to him with an issue he'd shrugged it off and essentially told me that it would happen and there's nothing I can do about it. I just wanted help, that's all I've ever asked for!! I don't need someone to manage every little detail of my disease - I'm perfectly capable of doing that myself and my A1c reflects my dedication. But when I'm struggling with something I want to feel comfortable addressing it and then feel satisfied that I was given something to even try and do to resolve it!! That's not too much to ask of a specialist, is it?!?
And that's where things went a little sour. She made this comment to me (not word for word but pretty darn close):
"I don't want to tell you to suck it up, but you have to think about what's best for the baby and just because you don't like someone - -"
I interrupted her right there. I'm pretty sure that my blood pressure increased a good ten points, I was so angry!
"It's got NOTHING to do with my liking or not liking someone. It's about my having ALL of the tools and resources available to me to manage this disease and keep this baby healthy! How is that not about me doing what's best for this baby??"
She acknowledged that she'd misstepped in saying that it had anything to do with my liking him or not (I frankly don't like or dislike the man, I just want to be able to trust and rely on the person in that position for crying out loud!!), but I saw the whole medical clique/politics thing come into play a few times afterward. She told me that she'd try to liase with the other clinic, which put me over the moon, but then told me that she'd 'talk to Eddie about it', that being the first name of the old Endo. Le sigh. I appreciate and respect that the man is well known in the area for his research and for being a part of the Edmonton Protocol, but that means nothing to my immediate situation if the assistance that I need hasn't been there!!!! Jeesh. So I ignored it and just addressed what I NEEDED from that visit, and I got suggestions. She was willing to compromise with me, showed understanding when I explained why, in my mind, loosening up control of my blood sugars was not an acceptable trade-off for not gaining any more weight. The communication was fantastic, in spite of the little hitches we had, and I did leave feeling 90% satisfied with the visit.
And they booked me for an appointment in two weeks. Freaking awesome. At the next appointment I'll see the Endo who originally put me on the pump, which I'm looking forward to, along with the CDE and dietician again.
And then I guess all I can do is continue to be an advocate for myself and my baby and the level of care that we require, and hope for the best. I wouldn't be the least bit surprised if my file had been labelled with some big red sticker, letting everyone know that I'm a troublemaking upstart and a difficult patient... and I'm okay with that. So long as it gets me the level of care that I'm entitled to, I'll continue to fight the status quo.
Otherwise, I might as well just manage it all myself. And wouldn't that be a shame?? Because nobody should have to fight the system in order to access the resources available... and you know what? I shouldn't be judged for being willing to do that, either.