What’s Really on My Mind

Lately, I seem to be unfocused and distracted when it comes to my diabetes care.  In general, I am doing fine, but am not as dedicated as I should/could be.  I know what it is but it scares me to think about it. 

I am terrified that I will never be able to have kids.

When I think about getting pregnant, I have two completely different detached mindsets and I can’t think of them both at once.  The first revolves around the fact of whether I can get pregnant and not believing that it could ever happen for me since my entire life I’ve never allowed myself to think as if it was a possibility, just in case.   The second is whether I even should get pregnant.  I have some retinopathy and lately I have had a little bit of protein in my urine.  I know that pregnancy can cause things things to become worse, so even if it is possible I’m not all that certain that it is something I should even attempt, even though every single fiber of my being wants it to happen.  It has been a dream of mine since I was a little girl: to be a mommy.  It’s all I’ve ever wanted in my life and it terrifies me to think that it will never be. 

When I think about being pregnant and having a baby, I am very emotionally detached from it.  It is more of a factual thing rather than emotional.  I can’t go there, for fear that it will crush me if I try to wrap my mind around the what ifs and what may or may not be.  Too much is unknown for me to fall apart at this point, even though I know I am only a heartbeat away from being debilitated by fear and sadness. 

I know at some point, I will have to face this, but I’d prefer to have more concrete information at that point, and right now it is all a dream and it “just hasn’t happened yet”.  It is too early to know that it can’t happen and soon I will attempt to find out if it shouldn’t happen.  Up until now everyone I have spoken to has said that if I try hard and get everything where it needs to be, that it CAN happen, that it is okay.  It will be hard work, but I should not feel like I should not try to get pregnant…but still there in the back of my mind I wonder. 

It just doesn’t feel real and at every moment I am terrified that the ball will drop right on top of me and crush every hope I’ve ever had of becoming a Mommy, and feeling that little baby inside of me.  But, for now, I remain detached, yet hopeful, and continue to tell myself that all I can do is everything possible to maintain control: of my diabetes, of my life, and of my emotions and wandering thoughts.

I know, I’m a slacker…

The newest pump malfunction has got me all in a tizzy.  I assume this is why my blood sugars have been off for so long… a slowly malfunctioning pump.  The button error was the last thing to go, which brought to light exactly why I think I couldn’t get my blood sugars below 200, no matter how much insulin I thought I was taking… who knows.  I got a new pump in, but my blood sugar at lunch was already 3oo something…

I’m frustrated and slipping into that “I’m just not gonna think about” syndrom.  How am I suppose to try to get pregnant if I have periods where my blood sugar creeps up with no reason, especially in the case of a pump malfunction!  Sure, my blood sugar would have been high, which is horrible for a growing baby, but I don’t know what else I could have done (oh, dumby, what about try injecting insulin instead of using the pump at all to see if that would have worked… hindsight, huh.)  I don’t know, I am just frustrated about it all and just don’t want to deal with it, which doesn’t help my blood sugars.  I’ll get over it and get back on track, and I have to start now.

Just One Second of Your Day, Please.

Some background: I was diagnosed with T1 when I was 9 and never in my life was I ‘controlled’… literally, figuratively, or any other way. I was in control of my own life, and I proved that through my behavior and my diabetes.  I went through some very tough times with my diabetes, which I will likely share later, and I fought it every step of the way… until I grew up, realized that by ignoring my diabetes, IT was controlling ME, and decided that I was not going to let this darn disease kill me, because there was no reason that it had to.  I found a new endo in my new city and over a two year period, I brought my a1c from an 11, to a 9, to a 7.5… and here we are today.

Last Thursday, I had my 3 month checkup with my endo.  Gold Star #1: I actually went and didn’t push it back another month, so I could “do better before my blood work”…although, the temptation was certainly there!!

I went in and was very upfront.  I told him that I had kind of slacked off after my last appointment and that I did not expect my A1C to be where it was before. (in fact I was thinking up to mid 8s).  While I had brought it down to a 7.5, some protein showed up in my urine that was above the normal range, and it freaked me out, threw me for a loop, and kinda pissed me off, especially since I was finally doing the right thing.  Old behaviors emerged and I gave up for a few weeks, but then I picked myself up, dusted myself off, and got back to it. And I told him that, although, not nearly so eloquently

Result came back and he calls, starting with (in my best deep old man voice, complete with a hint of condescending sass) “Well, it seems like you are in a rut here… “  Your a1c is 7.7 and if you are ever going to want to have kids, you need to get that under control.  The protein in your urine has gone down (of course, he didn’t give my numbers), but you need to work harder.”

At my appointment, (ah hmm, Gold Star #2) I suggested that I set up an appointment with a CDE and/or dietician, so he said “make sure you see the CDE and she needs to send me all of your numbers, and that way we can both hound you a little”

So, I asked (Gold Star 2 1/2??)what I can do to make sure I reduce the protein even further: “You can regulate your blood pressure, which is already good; work on your blood sugars; take your Cozaar, which you are doing; and reduce your protein intake” …and then went off on how to reduce ALL protein, not just red meat…

Now, let me be clear, I don’t mind being told that I am not doing the best I can do.  I KNOW that and I can take it, but do not act like I am a 16 year old who has been stuck at an A1C of 11 for 4 years (been there, done that). I don’t think having gone from 11, to 9, to 7.5, to 7.7 is in any way a RUT.  Sure, it was a little backward progress there, but I was upfront about that… I TOLD him it would be higher, so for him to act like it was some shock and was obscenely high was, well, disappointing, and I took it hard… especially the part about “ever wanting to be a Mom”.  What an ass. 

Do doctors, CDE, dieticians, etc. etc. realize that we are actually human beings that fight with disease day in and day out and that sometimes, it gets a bit tough and that sometimes, we lose it and give up, and fight it all and just hope and pray our bodies will just forgive us for whatever horrible sin we committed and be NORMAL again.  Do they know how tiring it is to pay attention to, and calculate, and control every. single. bit. of food that enters our bodies? It’s exhausting, and frustrating, and even when we DO do everything right, it still doesn’t work.

For one second out of every one of their normal lives, I just wish they would put themselves in our shoes and think about what WE are going through, instead of just thinking of us like robots who are programmed to do everything right, without emotion and without error. Just one second.

My Story

Welcome to my blog!  This blog is meant for me.  It is a place where I can wander through my own thoughts about my life, mainly focusing on my Type 1 Diabetes and the challenges that I face, and likely will face, as a result.  I do have another blog, but I need somewhere private for myself where no one who is physically in my life can find me. 

For those who don’t know me, I was diagnosed with diabetes when I was 9… 18 long years ago.  I haven’t always taken great care of myself, and for years, I totally ignored my health. I am now trying to get back on track, prepare my body for children, and myself for a very long life ahead of me!

I am excited to see where this journey will lead, but I am terrified i won’t ever get the courage to figure it all out. I suppose we will all see together