tired.

I'm going to apologize up front here. I need to whine for a bit. It's necessary sometimes. So here it is. One of those posts.

You see I'm so downright tired. I'm tired of all the choices and issues and roadblocks that diabetes presents in my life. Pure and simple.

Case in point, the continuous glucose monitoring system. On the one hand, I'm not thrilled about the idea of having yet another thing attached to my body. It took me a long time to make the leap to the pump in the first place. I'm not an early adopter when it comes to this kind of thing. All this technology is a bit creepy to me even though it often ends up making sense in the long run. It's just not where I naturally go at the start.

On the other hand, I could use some more data and feedback about what's going on with my bloodsugars. On the weekends, it's lot's of lows because I'm more active than during the week. I try to adjust but every activity is a little different and every result consequently, is also a little different. I'm thinking that better data will allow for better decision making. My doctor thinks so too and is encouraging me to make the leap. I'm at least hoping that the sensor will help because I'm tired of all the lows, day and night. I'm tired of how tired they make me feel.

So all things being equal, I've finally landed on trying the sensor. It's a close call but I'm thinking that it makes the most sense given what goes on with me. I'm thinking that the trade off will result in better information which will translate into better choices which will result in a better life. That's the goal at least, right?

BUT. Unfortunately, the continuous glucose monitor is not covered by my primary insurance company. They say it's and "experimental devise" and as such I have to buy it out of my own pocket. It's very expensive of course. What's worse is that they say if I buy it now as an unapproved, "experimental" devise, and then sometime in the future they cover it, they will still not cover any sensors going forward because I bought the devise before it was approved. But they have no idea if they will ever cover the device in future. So it's looking like this is a decision with significant, long term financial ramifications, on top of everything else I need to consider.

So it's back again to lot's of decisions to make. Back again to more diabetes pros and cons. Pros and cons and choices that have physical, financial, lifestyle and psychological ramifications. More stuff to navigate and assess and consider and decide about. More diabetes stuff to deal with.

All this makes me tired. It's not like I am thrilled about the devise in the first place. But I've moved through the decision process, which has taken time and some consideration. I'm resigned to the fact that the benefits outweigh the drawbacks. Which is good but a tiring process nonetheless. But then, even with that decision made, there are now more roadblocks and phone calls and decisions and ramifications to manage. I'm tired all over again. It's been 21 years of this dance. Coming to terms with realities and technologies and institutions and rules and hoops and negotiations and other people's ignorance (or insensitivity or vested interest in not helping). I've built my case with insurance companies and hospital staff and pharmacies. I've negotiated with myself over activities and blood tests and meals and shots and pumps and sensors and spontenaity. I've rallied and powered through, navigated and adjusted. And I have to say that I'm just plain tired from it all.

I'm sure I'll find the energy to deal with the sensor saga ahead of me. I'm sure, because I've felt this worn out before and I know that you just have to dust off, and start again. But before I do that, I'm going to slow down for a bit. Rest up and restore. Take it easy and prepare. Prepare for the next challenge on the diabetes horizon.

Comments

[Marina]

The information I got from my CGMS was invaluable. For example, I learned that each morning at 10am I was spiking from 100 to 240 and then lowering again before I tested at lunch. (A side effect of a medication I was on that I hadn't even considered.) I was low so often for so many years that I had developed hypoglycemia unawareness, but with the low alarms, and the constant feedback, I was able to adjust my basals and bolus rates and now I'm hardly ever high or low (and if I'm either one I *feel* it).

Another eye-opener for me was how high I would spike post-meal. After a few days of my high alarm going off non-stop every time I ate, I started waiting 20 minutes after bolusing before eating (which may seem like a duh, but when I started pumping 10 years ago, they said to bolus and eat right away, and I never heard or thought otherwise) and now I almost never rise above 180 after a meal, and often am able to stay under 140 the whole time -- amazing!

One key thing I have realized now that I've had the CGMS system (I have a Minimed 522 pump and the corresponding CGMS) is that you don't *have* to keep it hooked up to you 365 days a year. Once I fine-tuned everything, if I have a few days where I'm not doing anything out of the ordinary (normal exercise, normal wake/sleep routine, normal work routine), I won't necessarily hook it up. I won't lie -- I'm so used to my pump that it's like a limb, but there were definitely moments with the CGMS that I just wanted to rip the thing out. Taking a little break now and then makes it much more comfortable (and affordable!) when I am connected to it.

Definitely check out the Yahoo! group for CGMS ... there are tons of posts about how to make your sensors last longer (getting at least seven days out of three day sensors), what tape works best, etc.

[Scott K. Johnson]

A thought I had (besides the "yes, I'm tired too" thoughts) was that maybe you can "play dumb" when insurance DOES cover things, and then have them buy the whole system for you! You know? Kind of like to pretend that you never had (or don't still have) the one you bought yourself... ??

And boy, rest up and restore sounds heavenly!

[Amylia]

I'm sorry about the loophole. I know how that goes, too. I certainly can relate to feeling tired out. Life itself is hard enough. Add a disease that never goes away like Diabetes, and sometimes it feels like too much. Lay low and take care of yourself in all the cuddly, nice ways you deserve.

Thinking of you.

[Jayne]

I understand the "tired". I also understand that the D takes so much brain space...I don't know whether to give it more or less in order to live this life well. I'll be interested in your experience with the CGMS. Enjoy your "rest" before the next wave comes.

[Allison]

The constant roadblocks are so frusterating!!! I am also working on getting the CGMS and have had no luck so far getting my insurance to cover the sensors. I am unable to afford them out of pocket, but I do know they would help a lot in my diabetes care. I feel that I have decent control right now, but I know with constant blood sugars I could be in even tighter control. Until insurance starts to pick up a portion of the sensors, I am going to have to continue to checking my sugars 8-12 times a day and make the best judgements with that information. Good luck to you in your quest!

Allison
Community Outreach
AgaMatrix, Inc
www.wavesense,info