sometimes, you have to be a little pushy

When dealing with health issues or questions, you really have to put yourself out there and BUG people. If you want an answer, you shouldn't wait around--this is what having diabetes has taught me. My mom always tells me, "you really have to be your own advocate," and it's true. It's not necessarily that other people aren't capable or aren't going to get you the info you need, but I've found that you more often than not get your answers MUCH faster when you poke at people.

I get it. Doctors, nurses, other staff members, etc. are busy. They've got things going on and it's not that they aren't going to get back to you...they just might not get back to you as quickly as you'd like. You're not really their #1 priority, and that's okay. I'm not offended, but I am the #1 priority in my world when it comes to my health. I'm pretty impatient (except when it comes to small children and letting people vent), so I want my answers, and I want them ASAP. I strongly believe that if you want the results of whatever test you took, or if you have any kind of question, or if you just want to be reassured about something, you should give that person/company a call and poke, poke, poke.

For instance, I'm super excited because I got my CGM approved within a week! YAY! The lady I was in contact with told me she was surprised it went through so quickly because it can take up to 4-6 weeks. I received my shipment from Medtronic TODAY (I actually have no idea what's even in there yet) and I am so eager to get it going. She told me to wait for someone from Medtronic to call me and come train me. Well, I can't wait. So as soon as my dad called me and told me they had arrived (I shipped it to my parent's place because I'm at work and can't sign for it), I called Medtronic and told them I wasn't sure if I needed to wait for a call, even though that IS what I had been told. The lady was nice and gave me the name and # of the person who would train me, and then she transferred me to her line so I could leave her a message. I am really, really hoping she will call me today so we can make an appt. this weekend. I don't even know if they do weekend visits!

Anyhoo.

I guess the point of this post isn't to point out my impatience, but to point out that you really need to take a stand for yourself and be your own advocate. If you're not happy with your endo, search around for another one that is better suited to your needs. If you don't want to wait more than a day for your test results, call back the next morning. If you want that appointment or second opinion, call, be pushy, do whatever you have to do so that your health and wellbeing come first. Lesson of the day: Diabetes can make you more ballsy, and, that's a GOOD thing.

Leting go and moving on

One thing about having diabetes is that it's a constant work-in-progress. There's no time off from it. Once you've got it figured out, it can switch its entire game and leave you with a "wtf" feeling. It takes constant energy and effort to figure out what's so different about this time. Why am I low? Why am I high? Why am I STILL high? Why is today different?

One thing I've had a hard time with is what I'll call "denial". Not denial in the sense that I'm in denial over having diabetes--no, I'm in denial when I have to make changes, like tweaking my basal rate or bolus ratios. I get frustrated when I have to work harder at keeping myself healthy. And lately, things seem so hard. I know I worked my butt off to bring my a1c down after diagnosis, and I did. I succeeded. I "beat" diabetes. Over time, I brought it down to under 6%. But now, it's creeping up. I'm not as good at guessing or making estimates about how much insulin to give myself. Deep down, I know that really I am not trying as hard. I'm being a little too lax with it all. I'm letting that # creep back up (now at 8%), and I know that I need to work twice as hard now to bring it back down.

But sometimes, I don't want to work at it. I don't want to try. I don't want to put in the time and energy. I don't want to increase my basal or figure out different carb ratios depending on what time of the day it is. For the longest time, I had my basal set around 55, and I was in denial when I realized I would have to increase it to 60. I was in denial when I had to increase it to 65, and then 70. I know part of the reason for that higher basal is I have a sit-down job and I haven't been working out like I used to, so my body needs more insulin during the day. I know that. But I don't want to. Once I've figured something out or have it down, I don't want to have to re-figure it out. You would think that once you solve the problem, it would remain solved and you wouldn't need to worry about it anymore. Not true with diabetes. There are multiple solutions, and it can vary on any given day. And maybe sometimes, there is no solution at that moment...there is no "right" answer, and that's the hardest one to accept.

10 times

That's how many times a day I've been poking my sweet little fingers. OK, it's not always that many, but more often than not, it is. In the very beginning, I used to test 4-5 times a day. Once I incorporated workouts into my daily routine, it was more like 7. Now, as I've had a harder time managing my levels, it's been closer to 10. Sometimes it's even more than that because I can't tell the difference btwn having low blood pressure and low blood sugar. I know I am obsessing somewhat, but I'd rather be reassured!

Having enough test strips is like having enough water, or having enough food. I never used to run out of any of my diabetic supplies, but the last few months, I've been running out of test strips. I had to ask my endo to up my prescription so that I could get more...and even that wasn't enough! I had to ask a relative with type 2 for any extras; she always gives me several boxes when I ask, but I feel bad asking for them too often. I have enough for now, but I'm worried I won't make it to my next shipment. In fact, I know I won't at the rate I am going!

I hate the thought of not being sure if I'll have enough. I want to have enough of everything I need to manage my levels. Also, it's been almost a week since I sent in my paperwork for a CGM. Medtronic told me they weren't sure how long it would take, but I am hoping it doesn't take more than 2 weeks. I'm starting to get antsy!

Yippee!

It's funny how excited I am at the thought of getting new "toys." By "toys" I mean an upgraded insulin pump and CGM sensors. It's sort of like getting the latest technology...except this is not for my entertainment! Maybe excited isn't the right word, but I am eager for tools that will help me to better manage my diabetes. I know I am for sure getting the insulin pump upgrade, but I don't know about the sensors yet, so I don't want to get my hopes up about that. I know my endo said I should be fine, so let's hope I don't need a doctor's note.

I am also a little antsy because my new pump is also a new color. I've had the standard black color for 3 years now...it'll be odd to have something different. For those who don't know, I tend to keep my pump hidden in my bra since my pants are tight and the pockets do not have much give. This way, there's no bulge in my pocket and it's easier to hide the wire. I've noticed that I can't exactly keep the pump in my bra when wearing a white tanktop because the black usually shows through...I usually have to double up the tanktops, but I still get a little self-conscious about it. I know it's not a big deal, but it's another (small) reminder that I have to make some adjustments due to diabetes. I didn't think of this at the time of getting my pump, but now that I have a chance to get a new color with the upgrade, I decided to go with the clear color. Hopefully I am not disappointed, seeing as how I will be stuck with it for years! I know it seems a little vain, but this is something that's attached to you 24/7/365, so in my mind, I better like every little thing about it. Also, it'll cost a few hundred dollars, so it better be worth the cost!

communication breakdown?

I have to post about this real quick because I find it amusing. I called a certain company yesterday trying to reach a specific person. I had left this person's extension on my desk at work last Friday, and since I took the day off yesterday, I didn't have the # with me at home. I called in anyway and asked if I could find out this person's extension because I needed to talk to her about CGM stuff. The lady was very nice and said she would transfer my call, and I would be able to hear the extension while I was on hold. Fine, great, thank you. Easy, right? Wrong! After a few rings, it gives me the extension, I write it down, then get to the voicemail. It's a male voice...this is not the voice of the lady I need to talk to. I hang up, call back, speak to a different person who says she can transfer me. Back on hold, more ringing, and this time it goes to the voicemail of a woman, but NOT the woman I am looking for. I decide to leave my info anyway...this lady's voicemail says she will call me before end of day. She doesn't call.

I'm back at work this morning with the right extension. I leave her a voicemail stating that we spoke last month and I wanted to make sure I had the correct fax # so I could send her my blood sugar logs to start the CGM process. So, she calls me back and her response is something like: "Sooo, you want to know where we are in the CGM process?" OK, that may have not been her exact wording, but her basic response had nothing to do with my question and I almost felt like she thought I had asked her why I didn't have a CGM yet. Um, no. All I want to know is the fax # so I can start the process! Good Lord, I don't know why these things are so difficult sometimes. :)

love makes the world go round

Happy Valentine's Day! Or as I like to say on this day--Happy VAL-day! :)

Though I do think Valentine's has turned into a commercialized day, I think it's important to remember and think about the people you love...today and every day. It's good to take the time and think about whether or not you are making your relationships a priority and if not, what could you be doing to strengthen those relationships?

There are a lot of people in my life whom I love. Family, friends, boyfriend, and so on. Of course my love for each of them is slightly different, but I still love them and hope they know that each and every one of them is important to me! And I have to remember that even though having diabetes is not always easy for ME, it's also not very easy on the people who love me. These are the people who worry about me, ask questions, show that they care, are supportive, and want the best for me and my health. I don't know where I would be without them as my support system, so I think this song is very appropriate. :)

("Song" is supposed to show up as a link when you hover over it, but just in case: http://www.youtube.com/watch?v=y7gckaJV-to)

Envy

When I was younger, I was never really jealous of other people. I got good grades, played sports, had a good group of friends and had high self-esteem. One thing I've noticed about diabetes is that it has made me more envious of non-diabetics. When I was newly diagnosed, I started paying more attention to what other people ate. Before having D, I knew how to eat healthy, but I had never paid close attention to carbs, protein, fat, etc. I was never a carb counter because I didn't have to be. But after my diagnosis, I couldn't help but notice what other people ate. I couldn't help but judge them a little. And I couldn't help but be envious that they didn't have to worry.

They didn't have to worry about everything they put in their mouths. They didn't have to think about when they last ate and when they would eat again. They could exercise for as long as they wanted and never cut a workout short because their blood sugar was dropping. They didn't have to get up in the middle of the night, feel panicked over their blood sugar reading, and stand in the kitchen alone drinking orange juice, hands shaking and afraid to fall back asleep.

They never have to think about how what they're doing and how it affects their blood sugar levels. THEIR pancreas does the tweaking for them--if they've been sitting around all day, moving a lot, walking, running, standing, etc.,--THEIR pancreas knows what to do. There is no guessing game. They don't have to wonder what their stress levels are doing to their blood sugar. When they're sick with a flu or cold or fever, they don't have to keep tabs on their sugar.

They don't have to be dependent on a glucose monitor or insulin pump. They don't have to worry about having enough supplies to keep managing their health. They don't have to worry that if there's a major catastrophe, they would be the ones less likely to survive. They don't have to worry about making sure they are healthy enough to have a baby. (Don't get me wrong, there are plenty of health complications that can arise with having a baby, whether you are diabetic or not, but if you are diabetic, you have to be in even tighter control when pregnant. You can't give in to those cravings...you don't have a free pass to eat whatever you want. You have to be take care of yourself 24/7 so you and your baby aren't at risk.)

Mostly, the envy I feel is the fact that I don't have the same kind of freedom or flexibility in my life. I have to prepare for things, like working out. I have to keep on top of my health 24/7. I have to constantly think about every little thing I'm doing and how it affects my blood sugar. I HAVE to have insurance--I can't just go without it and hope that I won't get sick or get in some accident. I need it. I can't just quit my job and travel around the world. I have to plan. I have to prepare. I have to be in control.

Big decision

So my next big "D" decision is what kind of CGM I want. Do I go with the Medtronic sensors that link to my pump? Or do I go with the Dexcom that I hear everyone blog about? I guess I need to do some research and maybe make a pro/con list. I remember 3 years ago, when I was deciding which pump I wanted...I still wonder if I made the right choice! At one point, I even thought of switching over to the Animas Ping. Currently I am thinking of upgrading my pump since I am still under warranty and it sounds like it has some improvements that may also work better with the CGM sensors.

I am mostly just eager to get going on this whole process! I talked to my endo to see if she thought I would need a letter to help prove "my case." She said that the CGM data had 2 nights of me going low at night/early morning, which should be enough. She also recorded in my chart that I was having trouble distinguishing the lows, and that should also go in my favor. Fingers crossed!

Why yes, I will have another drink

Although diabetes is a part of my life 24/7, always poking its face in my biz, there are plenty of times when I don't even think about it. There are times when I tell myself to stop stressing out and just have fun--to be present in the moment! Over the weekend, I was in Seattle with my boyfriend visiting some good friends of mine. It was a short trip, but we managed to squeeze in a night out, which we were all looking forward to. None of us are hardcore drinkers or partiers, but we have, on occasion, been drunk together. When I was diagnosed about a month or so after I turned 21, I didn't drink for about 8 months...until my best friend turned 21. My dr. advised me not to since there was so much to learn, and I wanted to follow all the "rules." I felt as if I had enough drinking experiences at that point, so I didn't feel like I was missing out on anything. When I finally decided to drink, I was careful about it and I was with friends I trusted. I know drinking can be a scary thing for a diabetic, but it's a process you have to figure out and manage, just like exercising, eating cake, etc.

Even if I didn't have diabetes, I think I would feel the same way about alcohol. It can be fun in a social setting to have a drink or two. It can be relaxing and pleasant to have a drink of wine with dinner. Sometimes I'll go weeks or months without having a drink, and it's honestly not that big of a deal. Mostly, I'm not in the mood and would rather have water. And as I get older, I find it much easier to get a hangover, and that's not worth it to me either. :) I will say that I am more careful because of having diabetes. I usually stick to rum and diet coke or wine. Diet can make you drunker faster, but there's no way I'm having a regular coke. I usually don't give myself insulin because alcohol lowers your blood sugar--even the following day. In fact, I usually eat a snack before bedtime without bolusing because I know it can drop. The scary part is, of course, that you can fall low and pass out. This has never happened to me and I hope it never does. Another scary part is once you start knocking a few back, you might not care as much about having that sugary cocktail you avoided before. You might not care about checking your sugar or having a snack. A few times, I've had that "carefree" attitude, but in the end I always checked my sugar and stayed on top of it as best I could.

Back to Seattle. We went out for happy hour and had some great Mexican food. We split appetizers and I mostly nibbled while drinking my sangria. Then we did some good lounging, made dinner, and got ourselves ready to go out dancing. I love to dance AND it's a great workout, but I do consider the fact that 1. dancing is like exercising and 2. I will be drinking. My level was around 200 when we went out and I had also lowered my basal a bit in preparation. Over the span of 2-3 hours, I had a rum and diet coke, a shot of tequila and a shot of jager. The drinks were pretty strong and it had been a while since I had done a shot, so I cooled it after the jager even though I felt fine. We did a lot of dancing and by 12am, I was so pooped! A little lame? Yes, but I'm fine with that. :) I had to take a break and sit down, so I decided to check my # and I was at 87. That's a great number, but when you are dancing and drinking and bedtime is nearby, you want that number a bit higher. Insert and chew 2 glucose tablets, dance to another song, sit down, yawn. Once we got home, I snacked on a few crackers and guacamole, did a check (147) and decided I was comfortable with that number. I would estimate that I had a total of 15-20 carbs after seeing that 87...no bolus and a lowered basal. I woke up at 10am the next day with a 95. Sometimes I wonder what that # would be if I hadn't snacked, but I try not to go there.

The point of the post is that YES, you can drink even if you have diabetes. BUT, you need to be smart about it. You need to have friends who know what to do in case of an emergency. You need to know your limits and manage it like you would anything else. And really, you are not missing out by not having that 4th or 5th drink. The other point is that while I was dancing with my friends and my boyfriend in a crowd of strangers, I realized that no one was viewing me as the diabetic. I was just another 26-year-old doing "normal" things. I was having fun and I was in the moment, enjoying the moment, and I let my health stresses disappear. I focused on the fun I was having and the people I was with, and that is the moment where diabetes can go away for a little while.

Doubling up the dr. appts.

Lately it feels like I've had a dr. appt (or two) every week. I'm glad I get to leave work early, but I think I would rather stay late at work every day than have to go in for all these appts! I finally established my primary...I don't know why I put it off, but at least I made a decision, and I'm glad this person is my primary dr. He's the only one who recommended I do a tilt-table test, after seeing multiple doctors and undergoing several tests...HE is the one who helped give me some kind of answer so that I could move forward. I feel confident that he is a good choice for me, and he seems to be on top of things and honest, which I appreciate.

So I met with him today to talk about some of the ongoing issues I've had. Of course it's tricky because who's to say it's not diabetes causing these symptoms? I'm sure the D has a role in all of it, but I feel that it's more than that. So after listening to me ramble about how crappy I feel and how I suspected my thyroid, he said it could be that, but my symptoms also tied into fibromyalgia. However, chronic fatigue/adrenal exhaustion also ties in closely with its similar symptoms. Of course you can't really test for ANY of these, so they just base it on your overall symptoms. Bla.

Then he suggested a basic panel...liver check, kidney check, etc. AND a B12 check. He then asked if I ever had my vitamin D checked. No and no. No dr. has ever asked me this! It seems so simple--or at least it should be. I'm curious to see what those results are, but of course there is always a waiting game.

And to top it off, I've been high all day. High blood sugars, that is. Funny how the meaning of that word is very different for people with diabetes!

Bye-bye CGM...I'll miss you!

I recently tried out a continuous glucose monitor (CGM). A CGM reads your blood sugar every 5 minutes so you can see what your blood sugar is doing throughout the day. It's also good for spotting patterns and making tweaks. My CGM was blinded, which means I wasn't able to see any of the readings. After a few days of "wearing" it, I went back to my endo's office so the guy from Medtronic could take it out and download it. It was really interesting to see the graphs for each day. My blood sugar testing was mostly on target with what the CGM read, which is reassuring.

I feel like having a CGM would be so beneficial for me at this point in my life. I've had a harder time lately with recognizing lows. Sometimes I feel "low" but I'm really not (maybe it's my blood pressure dropping -- it's hard to tell). Other times I feel "off" and I am actually low. I also feel like sometimes my blood sugar just drops, even though I gave myself the right amount of insulin. It's almost like it can be really sensitive at times, which is the part that's hard to figure out. There is a method to the madness, but that method can change on a daily basis! It's not always easy playing pancreas.

Back to the CGM... I really, really want it. The annoying part is that even though it's been out on the market for 10 years, I have to PROVE that I need it. And what do they look for? The extremes: low #s and high #s. In my opinion, if you have a chronic illness and need/want a tool that might help you be in better control, you shouldn't have to prove anything! It's not like I want it for the fun of it or because it's the "cool" thing to have. This last month I actually have experienced some lows and a lot of highs, but I'm afraid it's not enough for them. I wish I could explain to them that I also have a low blood pressure issue and sometimes the symptoms feel exactly like low blood sugar, so of course I'm going to test more! This seems like proof enough (to me, anyway) that I need a CGM. The thing is I'm on an insulin pump so I can easily tweak it whenever I want. I catch lows pretty quickly and if I see that # falling below 70, I treat it immediately. I have become pretty sensitive to #s in the 60-70 range, whereas in previous years I still felt fairly "normal." I know they look for the LOW #s (like the 50 range), but I'm sorry...I TRY not to let it get that low because I don't want to feel like shit. I don't really like when I feel like I can't think clearly and my hands are getting shaky. I don't really WANT to get to the point where I'm in the 50 range because that could easily turn to the 40 range and lower. No thank you!

So to sum it up, I think it's absolute bullshit to tell a diabetic that you need to PROVE why you should have a tool that will help you control your illness and live a more "normal" lifestyle. Hopefully when I send in my log book, that will be enough for them.