Pockets

Wearing an insulin pump certainly comes with its fair share of issues. They aren’t enough to make me think of every NOT wearing one, but there are issues. Something that you nearly always hear from women insulin pumpers is how annoying it is to wear a dress AND an insulin pump. In fact, I can’t even count the number of times this has come up in conversations that I’ve had with other women with diabetes.

There have been so many blog post written about it. More than I could even tag here. Where to wear your insulin pump when you’re in a dress…. Oh my. I’ve shared with so many women and had them share their stories and tips with me and I LOVE it. Almost as much as I love dresses. But in truth, I’m the world’s WORST for buying dresses and not wearing them.

I love dresses. I love pretty things. I love to wear them. But I hate to wear them at the same time. Because in wearing a dress, my insulin pump (and in turn, my cgms) become inaccessible. Or at least way more difficult to be accessible. So, I don’t wear dresses that often. I buy them. And don’t wear them.

But I recently discovered something. Target has dresses with pockets. Really! Pockets! Pockets in a dress make an insulin pump the easiest thing EVER. Just a seam ripper to take a couple of stitches out, and I can thread my pump tubing through the pocket. And I have easy access to my pump AND I can wear a dress.

So far, I’ve purchased 3 dresses with pockets. And in the past two weeks, I’ve worn more dresses on more days than I’ve probably worn in 6 months. I love it. I want more of them. In fact, I want them ALL. Dresses with pockets make me more fashion happy than I’ve been in a long time. I know that with some minor alterations, any dress could have pockets added. But I’m too lazy to make the alterations myself and too cheap to pay someone to make the alterations.

Really, I can’t be the only woman who likes a dress with pockets. For any reason, not just insulin pumps. Pockets in general are just nice. Why don’t more dresses have them? What about you other ladies out there? Have you found dresses with pockets? Where???? I need a few (dozen) more.

D-Sick Day

I’ve written about the fine line between making people understand how complex and difficult living with diabetes is, while not letting them pity me or feel sorry for me. It is a never ending tightrope. I want to believe that I can do anything, in spite of diabetes. I DO believe that 99.999% of the time. Sure, there are pesky little things like being a pilot or being in the military, but I’ve done so many things in my life when diabetes wasn’t a huge in the “can I or can’t I,” just in the planning of the “I can.”

I’ve had diabetes for 28 years. Many years of living with a disease that factors into every part of my life. But I rarely let it get me down. In fact, I HATE when diabetes slows me down. And it does sometimes. As much as I don’t want to admit it. I will work through d relate sickness, and headaches, and low blood sugars and high blood sugars. I never bat an eye. Or if I do, the normal observer would never notice it as such.

The last time I had a time when I had to stop doing something (form more than a slight pause) or call in sick to work was almost ten years ago…until last week. In the past 5 months, my life has been turned on end. Instead of downloading blood sugars and adjusting basal rates for all the MAJOR changes in my life, I’ve been chasing problems. Fixing lows and highs as they come. Not the smartest thing to do, but for a while it was…. Working? Okay, not really working, but I was going okay.

Last week I was fighting yet ANOTHER low blood sugar. I had a friend over for dinner. I ate, and went low AGAIN. So, instead of testing and treating and testing again, I just ate. And drank. And ate some more. Needless to say, by the time bedtime rolled around, I was in the high 200s. I bloused, plus a little to treat said high. Less than two hours later, I was up again and I was in the high 300s. I bloused again. By 1:00 in the morning, I was nearly 500. I pulled by infusion site and started over. I tested for ketones (there were none, thank GOODNESS!). I was up again at 3:30 and had a “rant” on face book as I was still in the high 400s. I bloused again and went BACK to sleep.

I woke up the next morning sick. I still had no ketones. But my blood sugar was in the mid-200s. I had the pounding headache and I felt like someone had taken sandpaper to the back of my throat. And then I did something I haven’t done in nearly a decade. I called in sick to work. I was already scheduled to take half a day off as I had an early afternoon appointment with my endo (ironic, huh??), but the fact that I had to call in sick to work for something related to diabetes made me angry.

By that afternoon, I was nearly totally recovered. I was blessed to have an appointment that afternoon. After months of craziness, I talked with my nurse practitioner (who I see when I don’t see my endo) about all the changes in my life and about my blood sugars and about the adjustments that I needed to make to (hopefully) get me back on the right road. We talked about my lower a1C and about how I hated how I got there (roller-coaster blood sugars).

I walked out of the office feeling better physically and mentally. But I was still so angry. And hurt. And upset. And disappointed. Because I felt (feel?) that calling in sick because of diabetes meant (means?) that diabetes won. Somewhere in my conscious mind, I know better. But I can’t help the way I feel. I feel like I let diabetes won. Maybe just for that morning. But it won. And I hate that more than I hate anything. I hate it more than the shots, and infusion sites, and finger pricks, and the lows and the highs. I hate it more than I hate feeling bad because of diabetes. I hate that diabetes stopped me, even for a little while.

(Totally related note: Anyone who says diabetes affects only your blood sugar, hasn’t dealt with the mental effects of living with a chronic illness.) 

Technology is Scary: A Skeptic Changes Her Mind

I was diagnosed with diabetes in 1986, a few months before my fifth birthday. I have very, very few memories of my life before diabetes. It’s just always BEEN. Diabetes has been a part of me so much, that I’m not entirely sure who’d I’d be without it. I’m throwing a wild guess out there that I’d have more money, less stress and get more sleep, among other things. But, it’s nothing that I can’t deal with.

When I was first diagnosed with diabetes, I was on ONE injection per day of the (now) antiquated NPH insulin. My doctors thought that a 12.3 a1c was “in control” enough to take my tonsils out 8 months after I was diagnosed. Life was different. Diabetes care was different.

Sometime after that (I’m not sure on how long, and my mother is a little foggy on the details) I went to two injections per day of NPH and Regular insulin. I stayed on that regimen, along with a strict eating schedule and fights with my mother when I was (as kids often are) NOT hungry and didn’t want to eat what was on my plate.

When I was in high school was the first time that I really heard of an insulin pump. They were just really starting to get “popular.” I didn’t know much about them. Other than that I did NOT want a needle in me all the time (I’m not sure if that was the case at the time, or if that’s just what I thought because I was uninformed) and I didn’t like the ideas of being attached to something all the time.

For years I resisted an insulin pump. During those years I also dealt with losing insurance, getting it back, losing it again, and getting it back again, so my diabetes care was spotty and I didn’t see and endocrinologist regularly. But I did meet a lady that I went to college with who also had diabetes. We had many classes together because we had the same major and ended up graduating within a semester of each other. She was a “non-traditional” student, meaning that she was older, married, had kids and did not live anywhere near campus.

But despite those differences we became friends. I got along with her better than I did many of my peers because I was also working my way through school (though it was only me I had to worry about) and had a semi more grown up view of life than many of the people my age. I say semi because I was still very much a college student. LOL.  

One thing that this lady had was an insulin pump. I’d never really seen one before. She told me how much she loved her insulin pump. She showed me how hers worked. She was the first person that I ever knew that made me think “I might actually like to have an insulin pump.” That was the first time I didn’t think an insulin pump was scary.

During this time, insurance coverage for me was sketchy, so it would be several more years before I decided to take the plunge and join the world of the insulin pumpers. But I did it, not because I heard about this cool new technology. I did it because I saw someone LIVING with this cool new technology.

Over the past year or so, people have been talking about the bionic pancreas thing. I say “thing” because I don’t totally understand how it works, but I get the basics. When I first heard about it, I thought “That’s a cool idea, but I don’t trust it. I don’t want a machine making all my decisions for me.” But being a part of the Diabetes Online Community has put me in the position to know and to “know” people who are at the front lines of this new technology. There are people who are part of clinical trials. And what I’m hearing back makes me think, “I might actually like this.”

Of course, there are a ton of things that have to happen to make this machine something that I can get. And afford. More testing, more trials, more trials, more testing. And then the FDA. And we all know how long it can be for the FDA to get anything done. By the time they do, there may be some other top notch technology waiting in the wings. I don’t know.

But after reading more and more about people that I “know” and that I know, who have been a part of these trials, I have to thank them. Thanks for being that person that opens my mind to new technology. New technology that I’ll hopefully be able to get at some point. Technology that might have as big of an impact on my life as switching from multiple daily injections to an insulin pump.

If I can’t have a cure, steps forward in technology are nice. Huge steps forward in technology are life changing. And thanks for those who are sharing your experience so people like me (the skepctics) can have a more positive outlook on what's coming (we hope). 

Meet Penelope

So we all know that those of us in the D-OC like to name our medical devices. I've had the MiniMed Revel for a while now and this pump didn't actually have a name. I'd named my old pump Lola, but this one hadn't gotten a name yet. She'd been stubborn, and until I got her an outfit to wear, she hadn't given me her name.

A few weeks ago I custom ordered a pump skin for my pump. I did this with my last pump as well. My love of theatre seems to be pretty well known throughout the D-OC, but in case you didn't know I have another blog where I focus almost completely on theatre and other related things.

This pump skin is basically the American Idiot (musical!!) poster. I wanted to bring my love of theatre (and my current favorite show) to my diabetes life. I feel they mix more often than not, and I figured if I'm gonna wear a device twenty-four hours a day to keep me alive, I might as well make it look like something I love.

When she got her skin, she gave me her name. It's kind of silly, but on the first national tour of American Idiot, there was a piece of the scenery that the cast named Penelope. I don't know why they picked that name. I don't know where it came from. But Penelope was an awesome set piece AND she made things fun... and occasionally cause some physical pain. Sound like an insulin pump? It did to me.

So....meet Penelope, my insulin pump.

Scar Tissue Issue

I love that the title of this post rhymes. It kind of makes me laugh. And this little problem is one that I NEED to laugh at. Otherwise it makes me want to bawl my eyes out.

Let me start at the beginning… Several months ago I started having infusion sets give me “NO DELIVERY” alarms quite a bit. Always within the first 12 hours of a new infusion site; mostly within the first few hours of a new infusion site. “NO DELIEVERY” began to haunt me in my dreams.

I’ve been pumping for nearly 7 years and up until a few months ago, I could count on one hand the number of times I got a “NO DELIVERY” alarm. I was pulling out sites left and right. About 90% of the time, the cannula didn’t look kinked, or bent. Basically, nothing looked like it was wrong. It’s frustrating because not only to I have to start all over; it’s wasting a perfectly good infusion set. I hate it. I may have insurance, but it’s still money out of my pocket and I HATE wasting money. When a sensor goes back, I can fake it for a day or so and let it have time to acclimate. You don’t have that luxury with an infusion set. Insulin = life.

In the past month it went from having “NO DELIVERY” alarms more than I’d like to having 3 or 4 in a row before I could get a site that worked. I was BEYOND frustrated. I called MiniMed to ask their advice and to let them know that I thought it was scar tissue. I had been given a box of 6 mm cannula Mio infusion sites and they seemed to not give me any trouble at all.

The MiniMed people were great, as always. They replaced my sets and agreed that it was a very good possibility that the 9 mm cannula Quick Sets were hitting scar tissue and getting blocked or bent because of the scar tissue. They replaced 4 of my sets with 6 mm Quick Sets to see if those would work and told me that they’d be glad to replace the ones I have if the 6 mm ones worked.

I got then in the mail last week and AGAIN, I went through 2 of the 6 mm Quick Sets before I finally gave up and put a Mio in my lower back. It’s been my stomach that has been causing me the problems. The other sites I use (arms, lower back) haven’t been giving me trouble. I’ve just come to the conclusion that A) for whatever reason, the Mios work better on me right now and B) that my stomach may be too riddled with scar tissue to have infusions sites anymore.

So, here are my questions: Does anyone know what the difference is in the Mio and the Quick Sets? If the cannulas are the same length, why does it seem like only the Quick Sets give me trouble? And do you have suggestions on other sites for me to put in infusion sets? Something I can reach myself, since I have no one to help me with them.

My worst fear being forced to take a “pump vacation” due to something like scar tissue. I don’t want to have to do it. In fact, right now I refuse to do it. I just don’t know exactly what to do. Part of me thought that a different infusion set might be better. If not the Mio, then something else. Part of me wants to FORCE the sites I have to work (though I know that’s not going to happen). And a part of me wants to deny that anything is wrong in the first place.

Why doesn’t diabetes play fair?

"Non-Preferred"

So several months ago MiniMed made the announcement that they had teamed with Bayer to produce their new Link meter. Prior to that, they were teamed with Life Scan/One Touch. I’ve only been insulin pumping for six years, but during that time I’ve always had a link meter. Prior to the Life Scan/One Touch partnership, there was a BD link meter.

My One Touch Ultra Link

I like the convenience of a Link meter for my pump. It may not save me much time, but it does save me some time. It remotely sends my blood sugars to my insulin pump, saving me from having to punch the number in myself. Another great thing is that when I download my pump data, the blood sugars are downloaded as well, meaning I don’t need to worry about downloading a meter as well.

This week, MiniMed sent me my Bayer Contour Next Link. I’ve been reluctant about it just because I LIKE my One Touch. In fact, I used a One Touch for years before I starting pumping and was really glad when MiniMed switched from BD to One Touch. The thought of changing meters again made me kind of twitchy.

But, as with any new meter, curiosity got to me. I opened it up and decided I’d at least try it. I linked it to my pump (you can have more than one meter linked to your pump, which I didn’t know). And I used it. And I liked it. A lot. It surprised me how much. I like a lot of different meters, but having this one made me want to keep using it. I thought about switching after my next refill of test strips, so I stopped by my pharmacy and had them run my insurance to see if I could get the strips. Turns out Bayer strips are “non-preferred” and that makes them not covered. Accu-Chek and One Touch are (which I already knew).

My Bayer Contour Next Link

Honestly, I don’t mind staying with One Touch, but what about people who didn’t have that option. They are just getting their insulin pumps and are automatically given the Bayer meter. They would have to give up that convenience option because of stupid insurance.

There is supposedly a program that Bayer has that offers a discount on strips if you have insurance (not Medicaid or Medicare). You only pay $15 per month for strips. I thought about doing this as well. I could use the new meter and it would actually be cheaper than my current co-pays because they are more (way more) than the $15 per month. BUT then I read the small print. The program is only through December 2013 (and there is the even smaller print that says Bayer can cancel the program at any time).

Would I get used to a new meter? Learn to love it? Be happy about it and then be forced to go back to One Touch because the Bayer strips still aren’t covered by my insurance?? Or is this some type of bridge program til they can get more insurance companies to cover it? I don’t know.

I know I have one friend that was forced to change to the Bayer strips cause insurance quit covering they One Touch. I know another than had no problems with her insurance ever covering the Bayer strips. I have good insurance. Really good insurance. So I don’t particularly want to rock the boat. I just wish that they looked at glucose strips as glucose strips. They all pretty much cost the same, so why do they care?!

Has anyone else had trouble getting these Bayer Contour strips covered? Does anyone know what the deal is with the strip program? Is it going to continue? What’s the purpose of it? I mean, if more insurance companies aren’t picking them up at the end of the year, they will lose customers. We don’t have money to pay for strips out of pocket if we don’t have to.

Anyway, another choice in the life of a person with diabetes. Which meter? Sigh. This is life. Sadly, I can’t go with the “fun” meter just because it’s fun. I’ve got to go with what the insurance will pay for.

Fourth Times a Charm?

I swear, sometimes diabetes just likes to raise a fuss. It does it in whatever way it can and causes as much trouble as possible in as short a span of time as possible. A couple of days ago my blood sugars starting running on the high side. I wasn't sure why. It happens sometimes. But I dealt with it. I thought.

I was at work and I ended up bolusing ALL DAY LONG. It felt crazy. I figured I was 3 days into my infusion set, so my site was probably going bad. I didn't change it at work cause I only had and hour left. I decided to wait until I got home.

When I got home I grabbed my dinner and heated it up. As it was heating, I did a site change. New insulin, new site, ready to go. I bolused and started to eat. Not 30 seconds in, I get a "No Delivery" alarm. GAHH!

Okay, I hate "No Delivery" alarms. They are annoying. I don't know why I get them and nine times out of ten, my cannula isn't bent. But it still ends up requiring me to replace a set. I took out my new set and cleaned with alcohol and popped in a new set.

Problem? Um.... I didn't wait for the alcohol to dry. Guess what... sticky doesn't stick when it's still wet from alcohol. And you know what that means? Another infusion site.

At this point it was infusion set number THREE for me.

I finally bolused and ate dinner.

And waited. My blood sugar wasn't coming down. It was going up, up, up! I tried bolusing again. And by the time it was time for me to go to bed, it was obvious that my blood sugar wasn't coming down. I took a chance on the fact that I had ANOTHER bad site and ripped out my third site and put in a fourth.

I bolused again and set my phone alarm to wake me up at 2 a.m. for a middle of the night test.
I was 170 at that point. I bolused again and when I woke up I was in the 140s.

I figured I had taken care of the problem. But I ended up running my insulin pump on 120% basal for most of the morning.

It's almost like my body revolted on me after the initial high. After lunch, everything went back to normal and I've been doing well since then.

What's annoying is that it took FOUR new infusion sites and a day and a half of insane bolusing to get my blood sugars back to where they should be.

So.... maybe fourth times a charm?

No Fun, No Fair

As most of you probably know, I'm a huge fan of live theatre. It's so wonderful to get to see a show, especially if it's one you've been wanting to see for a while. Today I went with a couple of friends of mine to see a show in Nashville. Nashville is about 2 1/2 hours from me, so it was basically an all day trip.

This morning I got up and it was full diabetes change time. Basically, new pump site and new CGMS sensor at the same time. This happens occasionally, and MOST of the time, nothing bad happens. I changed my site, changed my sensor, grabbed a granola bar and headed out. My blood sugar was around 126, so I wasn't worried about driving or about anything else d related.

I noticed about 2 hours into my trip that I wasn't feeling that great. I suspected my blood sugar was high. When I stopped to test, it was. Over 350. I kind of flipped out at this. I bolused a LOT. It gave the insulin and I continued the rest of my drive into Nashville, as we were supposed to be meeting another friend for lunch before our show.

When I got to the restaurant, I tested again and was over 400. At this point, I feel like crap AND I'm sure that it's my pump site. But HOW??? If I have a kink, I get a "no delivery" alarm. I hadn't gotten one!

I grabbed my spare infusion site and headed to the restroom to change it. When I pulled it out, it was MAJORLY bent. Like, almost all the way over. This SHOULD have given me a "no delivery" alarm. But it didn't. At this point, other than being sick, and annoyed, there isn't a whole lot I can do. I wasn't going to miss my show. I gave an injection, put in the new site and went out to wait on my friends.

My stomach was bothering me and I knew I wasn't going to be eating anything at all for lunch, but I was drinking a ton of water and one of my friends got the bread, while we waited on the other friend. It was a garlic cheese bread, which I normally love, but my stomach was such a mess it made me feel even sicker. My other friend showed up right about the time I realized I needed to RUN (read: sprint like a crazy person) to the bathroom when I proceeded to throw up. And up. And up.

It kind of freaked me out. I haven't EVER thrown up from a high blood sugar that I can remember. My mom says I got sick once as a kid, but I don't remember it (thankfully). I had a couple of choices. I could go home (which meant I was not only wasting a ticket to a show, but ruining it for my friend who road down with me). I could go to the hospital (but what are they going to do, really??). Or I could tough it out. Take some more insulin. Drink some more (a LOT more) water. And go see my show.

I will admit, I felt better after my trip to the bathroom. I drank water the entire time we were at the restaurant. I had a head ache, but it wasn't anything I couldn't deal with.

I am glad I chose to tough it out. I wasn't at 100% at all today, but I managed to do okay.

After my long drive home, I'm sitting here being thankful that it wasn't worse. Wondering why my "no delivery" alarm didn't go off. And wondering what to do about the ketones still floating around in my body (I checked them when I got home. They were between small & moderate) when my blood sugar is basically back in range.

I still have a headache. My throat hurts from throwing up. And I think diabetes is a pain in the rear. I HATE that diabetes almost ruined my day. I hate that I had to feel like crap all day. I hope a good night's sleep will solve all my problems. 

Also, I hope I NEVER have to throw up from a high blood sugar again. It is NOT fun. Throwing up in general isn't fun, but knowing it was the cause of diabetes made it that much worse.

Choices

Life is a series of choices. What shoes to wear, what to eat for lunch, what book to read next, what job to take, what to study in school, what extra curricular activity to pursue, and the list goes on. Some are minor decisions. Some are major. And some seem minor and turn out to be major.

For the past couple of weeks, I've been sticking close home. After traveling so much in the past couple of months, I like sticking close to home. But with that I've gotten lax about carrying around my "emergency d supplies" with me in my purse. It's the little case that has a complete site change, extra batteries, iv-3000 tape, insulin, and a variety of other things. I work 5 minutes from my house, and if I need to leave, it's never a big issue to run out and make it back to work in my 15 minutes I get for break. So lately, I've been leaving it at home.

This morning I got up to get ready for church and it was a complete site change day. Meaning: new CGM sensor site AND new insulin pump infusion site. I was running a little behind this morning because I knew I had to be a church early and I didn't get up early enough. It was my week to teach Sunday School. I put my new pump site and new CGMS, grabbed breakfast and took off for church. I bolused in the car (don't ask) and there was no problem.

My emergency d supply bag

When I got to church it was around 9:30. At 9:40 I got the dreaded "NO DELIVERY" alarm. My kids were coming into the classroom already and there was no way I could leave. I knew I'd had my bolus insulin...at least I thought I had. And I made a choice. I stayed at church. Even with no insulin being delivered, I stuck it out. I knew what would happen. By 11:00, my blood sugar was 273. When I got home at 12:30 it was 370.

I could have left, I'm sure. Tried to find someone to take my class for a while so I could sneak out. But I HATE when diabetes stops me from doing something. I hate having to say "diabetes is making life difficult." So I made the choice to stay. I felt it was easier to deal with the crappy feeling from the high blood sugars than it was to have to get help from someone to take my class while I went home to take care of my insulin pump.

The result of my decision

I know it probably wasn't the best decision that I could have made, but it would have been even better to have had my emergency set change with me. Sometimes we make choices that don't work out so well. I made the choice not to carry my emergency d supplies. I then made the choice to stay at church, and essentially go without insulin for nearly 3 hours.

This experience did teach me a lesson though... don't go without your emergency site change!!! Take it with you!

Stingers and Creepers

I very rarely get a bad infusion site. I'm pretty lucky like that. I don't know why. I do often get what I call "stingers." To me a stinger is a site that stings like CRAZY when you insert it. Sometimes the stinging can last for a while. Sometimes a bolus can hurt when there's a stinger.

With me, a stinger usually goes away by the first day, so I try to stick it out. A little over a week ago, I got blessed with a stinger. I stuck it out and by the end of the first day, it wasn't hurting anymore.
Day two was okay. No pain and no real fluctuations in blood sugars, so you think everything is fine.

I ate a late dinner on night two, so I expected my blood sugar to rise in the night. It always happens to me if I eat after 8 p.m. Probably because I should have a different insulin to carb ratio at that time, but I refuse to change it because I live alone and I feel lows in the night WAY more than I fear highs in the night.

My CGMS went off several times in the night. I gave insulin every time. And I woke up over 200. It was a busy morning for me as I was having a yard sale that day, so I tested, bolused correctly and got busy. Within a few hours I realized I wasn't feeling the best in the world and tested again and was nearly 400.

Since I was due to change my site sometime that day, I thought I'd probably better go ahead and do it, even though I was busy. Cause I knew that with blood sugar levels that high I was probably going to need a new site just to take the massive amounts of insulin.

I didn't have any clue that I had a bad site until I pulled it out. And under the sticky on my infusion site was a knot under my skin. It was small, but it was a knot and it HURT. High blood sugar culprit found.

Was it a result of my stinger site? Who knows. That knot was there for about 3 days after I removed the infusion site. I don't truly know what caused it, and if I ripped out every single stinger I had, I'd be taking them out more often than I'd like to admit. Could it have been a fluke? Did I bump my infusion site and don't remember? Did I have a "bungee pump" that yanked ad caused it? Was it something that I could have stopped?

Probably not. There was no physical pain after that initial pain the first day. Apparently this bad site was a "creeper." You know the kind. The ones that give virtually no symptoms.


Such is life.

The Friendly Side of Flying

As you may know, flying with diabetes can be a flat out pain in the rear. Not only do you have to deal with the "normal" part of flying (3 oz containers, no shoes, carry-on size luggage, etc), when you throw diabetes into the mix you run into rules and regulations and technology issues many times.

I treat my lows with juice boxes most of the time. Since even a small juice box is over the 3 ounce size limit for flying, it can be an issue at security. Most of the time I only have to mention that I am a Type 1 diabetic, but I have had them argue with me before. So I've started taking the print off from the TSA website that states that I can take juice, just in case.

Also, Nashville airport (which I nearly always fly out of) has nothing but full-body scanners anymore. For most people, this isn't an issue. For me, it requires extra steps. According to my insulin pump and CGMS manufacturer, full-body scanners are a no-no. This means requesting a full pat down of myself and a swabbing of my hands and insulin pump for explosives. I travel enough that I'm used to it by now, but I also have had times when I've had to argue with TSA agents in order to get the pat down. Due to that, I now have a print-off from the website of my insulin pump company that states that I cannot go through the full-body scanners. You know, just in case.

A couple of weeks ago, I took a trip out of town and packed up my diabetes supplies, my print outs, and explained to my travel companion that two hours early to the airport was pretty important to me, due to the issues that I often face when dealing with airport security and TSA.

We were running late that day (completely my fault, not hers) and pushing time close for our flight. I tried to place myself in the shortest possible line, knowing that I was going to have to wait on a female TSA agent to do the pat down. I was blessed. I asked to opt out due to medical equipment and the guy never even batted an eye. He directed me to the metal detector and almost immediately there was a female TSA agent waiting to get my items (they won't let you touch them until after they're done with the pat down) and direct me to the glass box.

I started to explain about my medical equipment to the agent and she basically reached down and showed me her insulin pump....exactly like mine. Turns out she was wearing the same pump and CGMS that I was. We chatted while she did the pat down and talked about things like infusion sites and CGMS sites and meeting people with diabetes. It was quick, nice, and I LOVED not having to explain myself to the TSA agent.

I handed her a card with my blog address on it, so she may in fact be reading this post. If so, THANK YOU! You were wonderful and helped make that particular experience with TSA and airport security much friendlier.

That was the friendly side of flying. I can only hope I'm lucky enough to get her again when I fly (which I'll be doing a lot of in the next couple of months). Either way, it was a fun experience.

D-Blog Week: Fantasy Diabetes Device

Day 4 of Diabetes Blog Week
Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary. Tell us what your Fantasy Diabetes Device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?



There are so many fantasy devices that I would love to have. I could go on and on about what would be perfect, but I'm not sure where to begin and where to start. Back in December of 2010 I wrote a post asking Santa for a special designed insulin pump & CGMS. I'm going to repost that here because I STILL want this. I'm still waiting!

Dear Santa,

I’ve noticed that other people asked you for a cure for diabetes this year for Christmas. As much as I would like a cure for diabetes (this year or next), I’ll leave the curing up to God. Instead, I’m asking you for next year’s Christmas present right now.

It’s kind of technical and doesn’t really exist yet, so I figured I’d better give you and your elves plenty of time to get it together and perfected (and approved by the FDA, of course).

Santa, I’d like the perfect insulin pump/CGMS system. Yup, perfect. At least perfect for me. I have a great system, but there are other systems that have things that I like. So instead of switching systems, I just want you to invent your own.

Here are some of the things that I’d like the new pump/CGMS to include:


1.) Interchangeable CGMS. Santa, I’d like to have the option of which CGMS to use. I know that some CGMS works better for different people. So, I’d like the option to try them all and chose what was best for me…without having to change my pump

2.) I’d like the CGMS to read to my pump (like my current MiniMed system) complete with alarms and warnings, but I’d also like it to read to a second PDM that is also my blood sugar meter. (kind of a mix between the Animas Ping and the PDM for the OmniPod).

3.) I’d like to be able to operate my insulin pump from the aforementioned PDM/meter in the even that I want to wear a dress and don’t have easy access to my insulin pump screen and buttons.

4.) I’d also like the sensor for the CGMS to be FDA approved for 7 days, instead of my current 3 day approval for MiniMed’s CGMS.

5.) I’d like the CGMS to be accurate more often than it is. Instead of a 70% – 75% accuracy, I’d like to see it up around 90%.

6.) I’d like the meter to be as accurate as blood testing in a lab. The “small” differences in readings can mean a big deal in accurate treatment of a low or a high. It would help to have more accurate readings so that my care could be better.

7.) I’d like the alarms on the pump and the PDM/meter to have adjustable volume levels. Sometimes my current system just isn’t loud enough when it’s under 3 blankets and I’m asleep. Having a separate PDM on the night stand might help, but also, having louder alarms would be great because it would wake me up much easier than my currently alarms on my CGMS/pump.


And Santa, I’m going to leave my comment section open so that my other friends in the D-OC can add in their own updates to make the perfect pump/CGMS system. We deserve perfect if for no other reason than we have to work so hard because our bodies aren’t perfect.


Thanks Santa!


Love,
Cara and the rest of the D-OC

I'm still waiting and still wanting. If I can get this, it'd be almost perfect. Almost.

For more posts on today's topic, click HERE.

Opting Out

Sometime between the last time I flew (around a year ago) and last week, Nashville airport got full body scanners. I know people have all sorts of issues with these scanners. People complain for many different reasons. To be honest, I don't really like the idea of them, but the way they effect me has more to do with my diabetes than with anything else. Truth be known, if it weren't for my insulin pump and cgm, I'd probably go through the full body scanners, even though I don't like the idea of them, just to speed things up.
But, sadly, Medtronic says NOT to take an insulin pump or cgm through a full body scanner. Here is the exact quote from their page:

•Medtronic has conducted official testing on the effects of the full body scanners at airports with Medtronic medical devices and have found that some scanners may include x-ray. To avoid removing your devices, you may request an alternative screening process. If you choose to go through an airport body scanner, you must remove your insulin pump and CGM (sensor and transmitter). Do not send your devices through the x-ray machine as an alternative.

So, even though I was running later than I like (let's not even talk about Nashville traffic during rush hour, okay?), I saw those scanners and immediately let the TSA agents know that I couldn't go through them. They asked if I was opting out. I said, yes, I was. But in a way, I don't feel like I was really opting out. I feel like I didn't have another choice.

I waited in the little clear box while they found a TSA agent to do the pat down. She was very nice, and I explained to her about what my insulin pump and CGM were and where my CGM was located (I have the fear of them touching it and then freaking out and making me do a strip search!!). She explained how she was going to do the pat down. It was over fairly quickly, but it was much more... thorough... than the last time I had to do a pat down.

Then they made me touch my pump and swabbed my hands for explosives (I've dealt with that before). And I was on my way. I don't know that I felt violated, per se. I mean, I didn't exactly enjoy it, but I didn't feel threatened or like I was sexually assaulted or anything. In fact, I didn't think a whole lot about the whole deal until I got home and my dad asked me about it.

I'm not saying that other people who have had horrible experiences are over reacting. Because the place that I see the most problems is in the inconsistency of how things like this are done. When I flew back, the other airport had regular metal detectors and I just walked right though and didn't even tell them about my pump or CGM. And if security is that different in different airports, you know that the way pat downs are done, depending on which TSA agent you get, are likely to vary just as much.

I guess I just wanted to share my experience. And my wish that I had another option. Besides the full body scanner OR a very "touchy" pat down.

Two Sensors

I’ve had a history of issues with the new MiniMed Revel in regards to the alarms. During the day, they are fine. I love the predictor alerts. They have been fantastic for catching lows & highs BEFORE they get too low or too high. But at night, I don’t hear them. The new alerts left something to be desired. They are not as loud as the MiniMed 722. And sometimes I didn’t even hear the 722 alarms at night. But with the 722, after a certain amount of time the pump starts to vibrate. And continued to vibrate until you turned off the alarm. More than once that feature saved me. But with the new Revel, the alarms are not as loud. On top of that the vibrate feature on the pump is different from the 722. It vibrates for around 5 seconds and then stops. And doesn’t vibrate again for a while (I think about 15-20 minutes). This is a major issue for me.

It’s six of one, half a dozen of the other. I LOVE the predictor alerts. And during the day, the Revel is fantastic. But at night, especially when I live alone, I’m dealing with a potential disaster. I’ve been lucky so far, but I worry sometimes. I worry that the worst will happen. That I’ll be alone, not hear an alarm, and have a seizure or something.

I’ve talked about this in blogs before, and a couple of times on Twitter. But several weeks ago, Jen from Twitter (@Jenloves2travel) suggested using my old pump at a receiver of sorts. Basically, linking my sensor to BOTH pumps. And keeping the old 722 on my nightstand, making it easier to hear.

I didn’t even know that was possible. And it took some trickery, but it worked. I had to fake out the 722, by putting a reservoir in the pump and priming and then removing the reservoir. At that point I could link up a sensor easily.

I’ve been doing this most nights now. And it’s really giving me some piece of mind. I hope that it continues to work. And so far, it’s done some pretty awesome things. One night the 722 went off and I looked at the Revel. It had gone off a couple of times & I hadn’t heard it.

So, until MiniMed or some other company gives us the option of different volume levels and/or a separate receiver (Letter to Santa), this will have to work. Talk about creative engineering.

I want to give a BIG thanks to Jen, for the idea. And maybe it can be passed along to some of you, if you are having a similar problem.

Diabetes GPS

I am not very OCD about many things, but one of the things that annoys me is if my infusion site for my insulin pump is on a different side of my body than my CGMS sensor site. That’s usually not such a big deal, except when I go out of town for a weekend knowing I’ll need to do a sensor change…and take everything to do the change, except a new sensor.

Because of that and because I had been waiting to hear if my new insurance policy will cover my sensors (it’s the same company, but a different policy, so some things might not be covered), I decided to take a week off from having my CGMS sensor in week before last.

By the end of day 2, I knew I was going to hate every second of it. Because I’m so used to having the sensor, I have gotten out of the habit of testing as regularly. I still check around 6-8 times a day, but not as often as I should (especially when I’m at work and I tend to get busy and forget to test).

When I don’t test regularly, I basically don’t have a clue what’s going on with my blood sugars. And because I was not testing as regularly, AND I didn’t have a sensor in, I have dealt with some crazy highs and lows in the past week. I had several lows, but managed to catch most of them before they go too terribly bad. I also had more highs than I’d like to admit. One day I nearly hit 400. And as we all know, that left me feeling horribly ill and tired.

Having CGMS is like having a map of your blood sugars. Or even better, having GPS navigation. It tells you where you are going (maybe not how to get there…but still, it’s better than nothing) so you know what to expect. When you have CGMS, going without it is like taking off on a cross country trip. With no map AND no sense of direction. You might think you’re headed for California and end up in Wisconsin.

Sure, sometimes you can feel your highs and lows, but if you have been a diabetic for a long time like I have, often the ability of sense your highs and lows is dampened. Basically, your body gets so used to the highs and lows that it stops giving you the signs. If I’m lucky, I can still catch my highs and lows before they get too extreme, but sometimes I’ll be 52 and not even feel it. Once, I was 38 and still functioning normally. Other times a 69 will hit me so hard I’m left reeling.

That’s why I need my road map/GPS. I need my CGMS to keep me where I need to be. After 25 years of living with diabetes, my body has already suffered years of irreparable damage. And by keeping my blood sugars in range to the best of my ability, my body suffers less. This means fewer complications. Which means a longer, healthier life (are you listening insurance companies?? You should be).

By early last week, I put a new sensor in (leaving me 1 left). I needed to get my map back. I needed my control back. Mid-week a dear friend of mine in Nashville sent me a few extra sensors to tide me over until I heard something from my insurance company. Ironically, the next day I got my shipping confirmation from MiniMed that they were sending a new box of sensors (which means my insurance company said “okay”).

I got my ability to care for myself back. But how many people get turned down for CGMS, or have to fight it every step of the way? This post didn’t start out to be one talking about insurance. But it turned out that way. Sometimes I think my posts turn into something totally different for a reason. Maybe someone, somewhere will read this and realize how important it is to have good technology AND for people to have reasonable access to said technology.

There was life before CGMS. Just like there was life before the Internet. And cell phones. And cable TV. But I’d be willing to bet that people wouldn’t want to go back to a life without those technologies. I just hope and pray I never have to go back to life pre-CGMS and pre-pump.

Meeting Crystal

About two weeks ago, Crystal Bowersox (last season’s runner up on American Idol, and fellow T1 diabetic) tweeted that she would be performing at the Bluebird Café in Nashville on February 26th. Knowing that the Bluebird is a very small venue, I immediately went to their website and saw that tickets were only $10 (plus a food/drink minimum). With that price & that size of venue, I knew I’d do whatever I could to be there.

The reservations became available last Monday and I stalked the internet site (continually clicking refresh) until I could reserve a table for two. I wasn’t sure who would be going with me, but I wasn’t going to go alone, and I was sure I’d find someone to go with me. Strangely enough, I only had 1 person (locally) respond to my request for someone to attend with me. Everyone seemed to be busy or too far away.

I’d never been to the Bluebird Café before last Saturday night. For those of you who aren’t familiar with the Bluebird, it is basically a singer/songwriter showcase. It’s very small and has a “listening room” type policy. Basically, it’s the person, and their guitar (or other instrument of choice) performing their music. It’s very well known in the music industry. It has a ton of history and some amazing performances have happened there.

From the first time I heard Crystal perform on American Idol, I loved her voice. Finding out that she was a Type 1 diabetic made me love her even more. There’s just something about the d-connection that makes you root for a person. During her Idol run, I posted two open letters to her. I’m sure she never read them, but it was a way to get my thoughts out.

Amy T from Diabetes Mine ended up getting an incredible interview with her. Even then, I knew I’d love to meet Crystal. If for nothing more than to tell her that I think she’s amazing. And Saturday night I ended up standing in the same room, less than 6 feet from her.

First off, diabetes aside, Crystal (and her husband, Brian Walker, who also performed) is amazingly talented. She’s also amazingly funny and good natured. She came right out and said she didn’t have a set list, so part way through the performance, she basically started taking suggestions from the audience. She did a great mix of songs from her album (which you should GO BUY!), songs that are her’s but weren’t on the album, and covers of songs (some of which she performed on American Idol).

She talked about her first time performing at the Grand Ole Opry, which was totally impromptu the night before. She talked about being star struck by Vince Gill. It was kind of like listening to one of your friends telling you a cool story about something that happened to them. Crystal Bowersox gives down-to-earth a whole new meaning.



But, the diabetes was there too. I could see her diabetes tattoo on her wrist while she played her guitar. And before she came up on stage, she and her husband were sitting in the corner, not far from me. I couldn’t see them because of the way the wall was, but I heard the familiar “shunk” of a lancet device. I wasn’t listening for it. But I heard it. It’s a sound you can’t mistake when you’ve been hearing that sound for so many years.

Afterwards, Crystal stayed to sign autographs and take pictures. I tried not to go completely “12 year old stalker” on her. I tried to be normal. But I did tell her that the D-OC loves her. And I asked to see her tattoo (it’s beautiful by the way). I just wish I’d had enough sense about me to ask to get a picture of it.

I also managed to get her into trouble with her husband. :) I asked if she had a CGM. She told me she did, but didn't have on a sensor at the moment. I told her I didn't either (apparently we were both taking a break). But Brian was standing behind her and heard her say that and he said, "You don't have a sensor in? Why not?" :) She did ask me if I liked mine. I told her I loved it and told her about putting them on my thighs instead of my stomach (less brusing for me). Maybe I actually shared something with her that could help? That would be pretty awesome.

Meeting Crystal was pretty amazing. She’s an extremely talented songwriter, an amazing muscian and singer, and a very strong woman living with diabetes. I’m glad to say that I was able to meet her. Thanks, Crystal, for being so kind to all of your fans. I know it meant a lot to me, as I’m sure it did the others who were there.

Diabetes in Strange Places

Me and my theatre craziness. You’d think with a blog dedicated to theatre, I’d STOP writing about theatre related stuff here. Really, I don’t mean to. But in the past month or so diabetes and theatre have been intersecting in my life like crazy.

On Friday night I went to a production of Camp Rock: The Musical at Cumberland County Playhouse (if you’re interested in my review click here). I took my sister and her boyfriend, mostly cause I didn’t want to go alone and I thought that my sister would enjoy the show (turns out both of them did).

We sat third row, center, so our seats were very close to the stage and very well placed. When I’m watching shows I have a tendency to pick out ensemble members and watch them. They aren’t always a huge part of the show, but seeing their actions and facial expressions can be so fun and give you a slight bit of insight into a character that often has no name or story.

During this particular production I was watching a couple of the kids. And then I saw it. Right before the intermission, I saw the clear tubing at her waist. And in my head I know that a sound pack doesn’t have clear wiring. I followed that clear tubing with my eyes, right to the pink MiniMed insulin pump hanging from her waist.

Being a totally cool person with diabetes, I freaked out! Oh my! I couldn’t believe it (not like I don’t meet diabetics on a fairly regular basis or anything… LOL). After that I couldn’t help but watch that little girl. I also knew I was going to have to introduce myself after the show.

I found Lindsey and her dad standing out in the lobby of the Playhouse. All I did was take my pump out of my pocket and show it to her. Insta-connection, right D-OC? :) I introduced myself to her dad and found out her brother was also in the show (and I’d seen him in other productions at the Playhouse).

We talked diabetes for a few minutes and I got a totally cool D-pictures of us with our pumps. And I made some theater/diabetes friends. It’s fun to know that we can have an instant connection with another person, just by sharing the common bond of diabetes.

You'd Think I'd Have Learned

What I felt like the other night.

I know we all do it. I know it happens to the best of us. But you can't tell me that you don't think "I can't believe I did that" when for getting something as basic as testing and bolusing before a meal.


At this point in my life I am VERY close to celebrating (?) my twenty-fifth year of living with diabetes. I live only a little over 4 years of my life without diabetes. I've been testing and bolusing (or giving injections) before meals for nearly all of my life.


Yet when I sat down to dinner the other night I just picked up my fork and started eating. The really bad part about the whole deal was that I had my sensor turned off (it had thrown a CAL ERROR) and I didn't even notice the signs of high blood sugar until nearly three hours later.


When it hit me what I had done (or not done as the case may be), I just wanted to scream. You'd think I'd have learned by now that I have to give myself insulin when I eat.

Dear Santa,

Dear Santa,

I’ve noticed that other people asked you for a cure for diabetes this year for Christmas. As much as I would like a cure for diabetes (this year or next), I’ll leave the curing up to God. Instead, I’m asking you for next year’s Christmas present right now.

It’s kind of technical and doesn’t really exist yet, so I figured I’d better give you and your elves plenty of time to get it together and perfected (and approved by the FDA, of course).

Santa, I’d like the perfect insulin pump/CGMS system. Yup, perfect. At least perfect for me. I have a great system, but there are other systems that have things that I like. So instead of switching systems, I just want you to invent your own.

Here are some of the things that I’d like the new pump/CGMS to include:

1.) Interchangeable CGMS. Santa, I’d like to have the option of which CGMS to use. I know that some CGMS works better for different people. So, I’d like the option to try them all and chose what was best for me…without having to change my pump

2.) I’d like the CGMS to read to my pump (like my current MiniMed system) complete with

alarms and warnings, but I’d also like it to read to a second PDM that is also my blood sugar meter. (kind of a mix between the Animas Ping and the PDM for the OmniPod).

3.) I’d like to be able to operate my insulin pump from the aforementioned PDM/meter in the even that I want to wear a dress and don’t have easy access to my insulin pump screen and buttons.

4.) I’d also like the sensor for the CGMS to be FDA approved for 7 days, instead of my current 3 day approval for MiniMed’s CGMS.

5.) I’d like the CGMS to be accurate more often than it is. Instead of a 70% – 75% accuracy, I’d like to see it up around 90%.

6.) I’d like the meter to be as accurate as blood testing in a lab. The “small” differences in readings can mean a big deal in accurate treatment of a low or a high. It would help to have more accurate readings so that my care could be better.

7.) I’d like the alarms on the pump and the PDM/meter to have adjustable volume levels. Sometimes my current system just isn’t loud enough when it’s under 3 blankets and I’m asleep. Having a separate PDM on the night stand might help, but also, having louder alarms would be great because it would wake me up much easier than my currently alarms on my CGMS/pump.

And Santa, I’m going to leave my comment section open so that my other friends in the D-OC can add in their own updates to make the perfect pump/CGMS system. We deserve perfect if for no other reason than we have to work so hard because our bodies aren’t perfect.

Thanks Santa!

Love,
Cara and the rest of the D-OC

Driving Without a Map

When I first became interested in CGMS, my doctor at the time explained it to me in interesting terms. He said that testing your blood sugar gives you a picture of that exact moment in time. The down side is that you are unsure if your blood sugar is rising or falling. He said, "You wouldn't drive a car if you only saw pictures of the road, right?"

CGMS has been very good for me and my diabetes care. So much so that I fought insurance for it, I've dealt with the "negatives" of CGMS (i.e. long needles, some inaccuracy, extra expense), and in doing those things, I fully believe I have much better control over my diabetes.

Since starting CGMS, I've not gone more than a day or two without CGMS. I don't like to be without it. In a sense, I've become dependant on the knowledge it provides me. I've gotten used to listening for "high" and "low" alarms.

In the past couple of weeks I notice something... I screwed up and forgot to reorder sensors. I notice when I pulled my next to last one out of the box. Of course, I immediately called to reorder, but once again insurance had to give an approval. I thought it had been taken care of last go around, but apparently the approval that the insurance gave last time was for a one time order. So, approval had to be sought again.

Since I get about a week out of a sensor, I wasn't too worried about it, but I ended up not hearing anything about my approval from MiniMed or the insurance. My second to last sensor was due to come out last weekend. The timing was really kind of perfect. I was sick. And while that would seem like a bad time to be without a sensor, it really isn't. I find that the medicine usually makes the accuracy even worse than normal. And when I'm sick my blood sugar runs a little high anyway, so I don't have to worry about those pesky lows.

Luckily, as I'm getting better, I contacted MiniMed and found out that they shipped my order of sensors on Friday and they should be arriving today. I'll be putting my last sensor in this morning and I'll be feeling much better knowing that I have more than random snapshots of my blood sugar levels. I'll have a map to help me out.