Saturday, October 12, 2013

Planning for the Upcoming

For the first three or so years, I looked forward to endocrinologist appts. I loved going to see him--he was fun to talk to, a good listener, and it felt great speaking with someone on my scientific level or higher (I'm the only academic in a non-academic family).

Then I started having consistent highs. Not the occasional only-before-my-period ones I'd had almost since he gave me a meter, but constant I-can't-eat-anything highs that knocked me out several times a week and disrupted my life.

And that's when it started. When I realized that there was more going on than he would acknowledge. That was when I started dreading the appointments.

I hate it when my problems (and their absurdities) aren't acknowledged. But I think I'm beginning to hate being mistreated more.

He knows that it makes no sense for me to be a type 2 diabetic. Hell, he knows that pre-diabetic shouldn't apply to me. He KNOWS there's stuff going on.

There was one night that he called me back at 11 PM after I'd left a message for him that morning. During that phone call, I asked him if I was the only one who thought it was weird that I needed my Metformin dose upped just weeks after going on it. (To be fair, he was titrating me up, but I don't think he expected me to need 1,000 mg or, later, 1,500 mg, per day.) And he replied that it's very weird, and have I ever heard of a type of diabetes called MODY.

There are tears in my eyes as I type this.

I've tested negative for type 1 twice--most recently in June. My father has followed the same bizarre blood sugar trajectory that I have. MODY makes sense. It makes a LOT more sense than T2.

There is such a thing as a thin T2. There is such a thing as a young T2. There is no such thing as a T2 teenager who is all of eight pounds overweight (and, if it weren't for certain extra muscle in a place I don't want it, I wouldn't be overweight at all). Most of my fat isn't even in my stomach area. I walk a minimum of two miles a day several days a week (it's usually more). I don't eat only veggies and fruits, but I don't eat too badly. I've been trying to run. T2 just doesn't sound right.

The ONLY thing going for the T2 diagnosis is the high c-peptide I had for a couple of months that went away on its own (or with Metformin). I can think of two or three bizarre but possible things that could cause that and my diabetes.

Lately I've been on Metformin 1,500 mg. I hate it. On 1,500 mg a day, my stomach hurts almost all the time, I have frequent, terrible heart burn, occasional nausea, and...other unpleasantness that makes me wonder where the nearest bathroom is just in case All. The. Time. I can't take 1,500 mg.

So I switched back to 1,000 per day. I feel SO much better that it's almost ridiculous. But my blood sugar is already freaking out about that. I don't even want to think about what it'll be like when the rest of the 1,500 leaves my system in a few weeks.

Here's the thing, though. I don't want to go on any of the other pills.

Most of them have lovely side effects. Some of them (like Januvia) have been proven to cause higher rates of pancreatic cancer. Actually, it was suggested about a year ago that Januvia actually has higher rates of ALL cancers to its name. (I don't know if that ended up being true or not, but it's still scary.) An entire CLASS of drugs apparently causes the patient's body to "run out" of insulin several years into treatment.

I am not a lab rat.

Even without the side effects, I can't do this. I can't handle repeatedly changing dosages and meds. It's my personal, rather strong, feeling that I will switch meds more and more until I end up on insulin.

And that makes me think, what's the point?

Why am I going crazy over meds that may or may not work, may or may not kill me, when there's one, very obvious, alternative?

Insulin is, obviously, natural. Its only real side effect is hypoglycemia. It's guaranteed to work.

I'm not belittling hypoglycemia or even insulin itself. Insulin is an extremely powerful tool, which therefore has a lot of room for mistakes and problems. A little too much can lead to severe hypoglycemia, a little too little can lead to highs.

Unlike most patients who start on pills, I'm not afraid of insulin. I spent years chasing lows before my blood sugar turned completely upside down. I often had weeks where I had multiple lows in the 50's. I was almost always low when I came home from school (a mile's walk will do that, I guess). I still keep sugar with me everywhere because I know I can go low, even though I don't really anymore.

Let's say I have a healthy respect of insulin.

My preference for insulin also probably has something to do with how sure I am that I don't have T2. Very early onset LADA or MODY, I don't care--but I'd choose insulin for both of them, anyway.

I'm seeing my endocrinologist on Friday. And because of all of this, I'm terrified.

He doesn't like meds. The fact that I got Metformin from him was a miracle. I MUST get off that med.

In the past, he recommended a different drug that I don't foresee helping at all. I get the feeling he'll try recommending it again. We need to have a serious talk about what meds I will or won't take, as well as what he believes I might have. (Like that's going to get me anywhere.)

Of course, all of this needs to take place without my father in the room, which won't be easy. (We usually have dual appts, which works fine for time issues but doesn't work well when I have a serious issue I need to broach--I don't want to bring this up in front of my father.) My father believes he has a right to be in there. Maybe he did--when I first started seeing him at 16. And I don't mind having him in there usually. I do for Friday.

And no matter how much I try to pretend I'm not nervous, it's obvious I'm terrified. I've woken up grinding my teeth so many times in the last week that I'm surprised I've gotten any sleep (or have any teeth left). I can hardly concentrate, and the only thing I want to do is listen to really loud music.

The best part? I don't know anyone in real life who gets it. This is the only place I can really vent or even TALK about all this stuff.

I'm so sure he won't listen. I'm so sure he'll brush off my fear of these meds. I'm so sure he'll brush off the T2/MODY/LADA debate. I love him because he's so knowledgeable and helpful and sweet--but is it really worth it? Is it worth keeping a doctor I know is giving me a hard time? A doctor whose appointments I dread? (Though honestly, I hate all doctors appts at this point. If I never see another doctor, it will be too late.)

I might be back here before I see him to rant some more, I might not. But at least I know there are one or two people listening.

"Underneath my skin is it/ Just anger just frustration/ Underneath my skin is it/ Just nothing all these feelings" ~Faber Drive

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