How Low Can You Go?

As I'm sitting here, my blood sugar is 59. This is probably the 3rd or 4th low I've had this day.  Multiply that by  7, and you get what I've been dealing with for the last week. Actually it's probably been the last 2 weeks. I can not freaking get my blood sugar to stop plummeting! 

This is what diabetes is like. It's fickle.  I have really done nothing different in my life. If anything, I should be higher, because I haven't really worked out in more than a month.  To combat this recent can't-keep-myself-from-going-low-phenomenon, I've lowered my basal rates, my I:C ratio, and my correction ratio--and still nothin'.  Maybe I'm suddenly cured?! (Nope. Seeing as if I over treat my lows, I spike up really high, so I think we can safely rule out a miracle). 

Usually I can handle diabetes adjustments on my own, but if this keeps up, I might actually have to call in some help in the form of an e-mail to an endo (gasp!).  But, because I'm horribly prideful, that might not happen. And, let's be honest, after 18+ years of this disease, is the endo really going to do anything that I'm not already doing? Doubtful.

 . . . And I'm off to down some more glorious, chalky, orangey glucose tabs. Seriously, I should buy stock in those things with the way I'm going through them right now.

Stewie-betes.

So, I'm not a fan AT ALL of Family Guy, I think it's crass and not funny. But, I had to use this to illustrate a point.

Sometimes diabetes really sucks. 

And it feels an awful lot like I'm Lois and diabetes is Stewie. And it will just not freaking let up!

More In Common: A Guest Post from Maya at Marfmom.com

I asked my friend Maya, a wonderful friend I made during graduate school, who blogs at Marfmom.com, to guest post on my blog this month. In addition to having a Masters in Public Health, Maya is a tireless patient advocate, an amazing volunteer for the National Marfan Foundation , a wife, and a mother of two adorable children. Check out her awesomeness! Many thanks to Maya for taking time out from her very busy life to guest post here! 

I was so excited and humbled when Erin asked me to guest post this month!

My name is Maya, and I’m a patient advocate. I have Marfan syndrome, a rare, life-threatening genetic disorder of the connective tissue. I’ve been volunteering with the National Marfan Foundation (NMF) since I was a teenager in various capacities, most recently as coordinator for the teen program and member of the board of directors.

You might be wondering why Erin asked me to guest post during Diabetes Awareness Month, when I don’t have diabetes.  Well, my diagnosis is reason enough to be an advocate, but I’ve got 3 more reasons. My husband, Mark, has Type 1 diabetes, celiac disease, and Aspergers syndrome. Our older son, M, has autism. Our baby, J, has Marfan syndrome like me. Our family is a mixed bag of medical drama.

On the surface, these are very different disorders. They affect different body systems, require different treatments, have different symptoms and different outcomes. It’s easy - too easy - to focus on the differences. Many of us with chronic illness look for people like us, people who can understand the unique predicaments of our own diseases, and cling to them. Erin has asked me to write about the importance of coming together across diagnoses.

This summer I attended a mini-conference for parents of children with special needs. One of the speakers discussed how he believes that disability rights will be the next big civil rights movement in this country, and I agree. The only way that we’ll be successful in our efforts for equal opportunities is to combine resources. Alone our various patient organizations are small, but together we will be a force to be reckoned with.

The conference attendees took this idea and began to run with it. Think about it: at the basic level, we all want the same things. We want to be heard. We want good medical coverage. We want to be accepted--within our families, our workplaces, our communities. And although the specifics of what we want might be different, our basic advocacy efforts overlap. We realized that we have more in common than we’d originally thought, and created the Twitter hashtag #MoreInCommon to keep the conversation going post conference.

Coming together is useful in more ways than just politics, however. As non-profit organizations we can learn so much from each other. Take the JDRF’s Bag of Hope program, for example. What a great way to get newly diagnosed families connected to each other and the organization from the get-go! The NMF is now working on getting information packets into “Marfan clinics” nationwide to achieve the same goal. In turn, we’ve had various rare disease groups contact us about our conference setup because they’d like to adopt a similar format.

So this Diabetes Awareness Month I honor the journey that those of you with diabetes are on. I also invite you to come to the larger table so that we can learn from each other and advocate for a better future for those of us living with a chronic illness.

Giving Thanks.

I love that Thanksgiving falls during Diabetes Awareness Month.  It gives me a nice nudge to not only reflect on all the usual things I'm grateful for, but to think about all the things involving diabetes that I'm thankful for, too.

Some of the things I'm been thinking about over the last few days are:

• My family: I'm so grateful to have a family that supports my diabetes efforts! My husband wakes up in the middle of the night with me if I'm low. He never complains that we spend so much of our money on medical costs. He doesn't see me as "sick".  I know not everyone has as supportive of a spouse as I do, and I know how lucky I am to have him.  I'm also grateful for my extended family, and how supportive they are, too! 
• Modern Medicine: I marvel at this every year. When I think about what it was like to be diabetic even 20 years ago, I feel lucky to be alive now.  As much as I complain about how much things cost, or how things don't work perfectly, I really am grateful for what I do have.
• Diabetes: Sometimes I sit and fantasize about what my life would be like without diabetes. It would be amazing! But, then I think about all the people I've known and all the things I've learned, and the person I've become because I have diabetes, and I realize that have to be grateful for it, at least in some sense. 

I hope you all are having a wonderful Thanksgiving, and that you're taking the time to think about the things you are grateful for. I know not everyone's life is sunshine and roses all the time, but I do think that every person has at least one thing they can find to be thankful for.

Happy Thanksgiving!

Word Diabetes Day

Today is Word Diabetes Day.  I'm posting this pretty late today-I've been travelling most of the day- but I still wanted to take some time to commemorate what today is about.  World Diabetes Day is about creating awareness about the impact diabetes has on the world.  When we talk about the impact diabetes has on the world, we talk a lot about how many people have diabetes, how many people will get diabetes, the financial burden of diabetes, the human toll of diabetes, etc., etc., etc.  Instead of focusing on all of those things, though, I'd like to take my cue from a friend of mine from diabetes camp, who posted this on her facebook page today:

"I just celebrated 18 years of living with (and not suffering from) this chronic illness. It shapes who I am on a daily basis."

Diabetes certainly has an impact on the world, but it's not always a bad one. I'm a better person because I have diabetes. Like my friend, I believe I am living with (and not suffering from) diabetes. Some days it sucks.  It affects me every day. But it also shapes me every day-into stronger, more understanding, more compassionate person.  So today, I want to celebrate the the lives of all those living with diabetes, I want to honor all those who love and care for people living with diabetes, and want you all to know that diabetes can have a positive impact in the world!

Diabetes Awareness Month!

Did you know that November is National Diabetes Awareness Month? Chances are, if you're reading this blog, you already did.  Last year, I blogged every single day about diabetes, to create awareness in my sphere of influence, and to educate people on some of the less understood things about diabetes.  If you want to read those posts, they start here.

This month is just a smidge busier than November last year, so I am not going to be quite as much of a diabetic rock-star.  But, I still want to post some things in honor of this month and in honor of those who live with diabetes, or are affected by diabetes on a daily basis.

Last year, I wrote a lot about the basics of what diabetes was, how it is treated, stuff like that. This year, I want to make my awareness blogging a little more personal. I'm going to be travelling a lot these next few weeks, but I do plan to do a few posts about how diabetes specifically affects me, on a personal level.  I'm not very good at sharing my inner personal thoughts and feelings, but I will try hard to do so, knowing that what really matters with raising diabetes awareness is not that people can quote how many Americans will have diabetes by 2040, or the details of how a pancreas works, but that they will know and understand the impact this disease has on the individual.

So, stick with me, this month, peeps!

And, until my next post, please check out this amazing video where a little girl explains how diabetes affects her, in her own beautiful words!

A Big Thank You!

The walk was a success! Ben & I ended up raising over $300 between the two of us. He beat out my fundraising total by $10 right at the very end, because his stinking co-workers started donating! Oh well, I can't complain too much, because it all goes to a good cause. The walk on Saturday was tons of fun. Ben's company had a huge team out walking, and it was great to be surrounded by "my people" who just get it.

We'll definitely participate again next year!

And, finally, thank you thank you thank you thank you thank you to everyone who so generously donated! We know the economy is rough these days, and it just amazes me over and over again how willing people are to share what they have, even when everyone is pinching pennies these days. I can't say thank you enough!

Walk to Stop Diabetes!

Hello friends! My husband Ben & I are going to be participating in the ADA's Walk to Stop Diabetes. If you want to join our team or donate to the cause, please check out my walk page!

Thanks friends!

Gluten and Diabetes.

*FYI: This will be a big repeat of info for a lot of my friends who follow me on my other blog, already, sorry!

Well, I've done it. I've divorced myself from gluten. And I want to tell you about it, in case you are having the same experiences that I have been having and don't know what to do.

I've been having lots of GI symptoms on and off for the past few years. At first I chalked it up to my known issues with dairy(lactose intolerance). But, even if I avoided dairy, I'd still have stomach issues. I'd get really bloated, have some "lower intestinal distress" and my blood sugars would be crazy. For example, I'd take my insulin & eat, my stomach would feel really bloated like it wasn't digesting, I'd plummet low because (I assume) my food wasn't digesting or absorbing yet. Then, I'd treat this low, and then hours later I'd skyrocket high as my food finally digested! I thought I had gastroparesis. We all know this can be a complication of diabetes, and a scary and particularly trying one at that. And I was super in denial about having this, even though the symptoms were spot on.

I finally told my endo I was having stomach issues, and she suggested I be tested for celiac disease via a blood test. The blood test came back negative, but she suggested I try going gluten free because I might have a gluten intolerance that wasn't showing up on the blood screening. I didn't take her advice (mostly because I thought going GF would be hard!), and just suffered. Well, to make a long story short, several friends (both Type 1 and not) and a cousin of mine have all had to stop eating gluten as of late, and their experiences motivated me to try it.

Good crap, what a difference it has made! Not only have those symptoms which I thought were gastroparesis disappeared, but my blood sugars have been SO much easier to control, and I suspect I might actually need LESS insulin now! When I don't eat gluten, I don't have any of those problems I was having before!

From reading some forums where other diabetics suspected they had gastroparesis, I know that there are some people out there who have the symptoms, but all the tests (like gastric emptying tests) say they don't have it. And they suffer a lot, without any diagnosis. I want to encourage those people to maybe try eliminating gluten and see if that helps! I didn't realize how similar the symptoms could be-and at the same time how varied the symptoms for gluten intolerance are-, and I think a lot of doctors don't always think to test for stuff like gluten intolerance or food allergies. I also want both doctors & patients (especially Type 1s) to know that gluten intolerance and celiac disease are often co-morbid with Type 1, and that we all need to be much more vigilant about make sure we are screening and testing for this, just like we do for other co-morbidities like thyroid problems.

So, that's my story about gluten. I hope it helps someone out there in some way!

To Basal or to Bolus . . . that is the question . . .

So, I'm at a point where I'm finally getting really good results with my basal rates. It's not amazing all the time, but it's good enough to get me a 6.5 A1C! I am wanting to make some adjustments, but I'm not really seeing any patterns and am wondering if I need to adjust my basal rates or bolus ratios?

How do you tell if you need to adjust your basal rate or bolus ratios at this point? Any of my D-friends want to weigh in on this one? Are my random, pattern-less outliers the result of inaccurate carb counting on my part?

Maybe I should just start upping my basal rate and see what that does? So much of diabetes is a WAG. :)

Grateful

I am grateful for insurance. Affordable medical care in the U.S. is nearly impossible to get without having a good insurance plan (notice I said good insurance plan, as not just any insurance plan will make your health care affordable). I'm lucky enough to be on a plan my husband is offered through work. And as much as I complain about co-pays and premiums, I really am blessed.

Case in point:

I just found out that one single vial of the insulin I use (the kind-out of all the other kinds-that works best for my body) costs $113.52. That's $113.52 per bottle, people. I used approximately 3 bottles a month. Do the math.

Okay, I'll do the math.

I have to buy 3 months worth at a time, in order to get a discount:

3 bottles per month X 3 months=9 bottles

9 bottles at $113.52 per bottle = $1021.68

With our co-insurance, I only pay $160 for a 3 month, 9 bottle supply. Sheesh. I remember what it was like to not have insurance for a while, and I know full well how lucky I am. I'm lucky. I am blessed. And tonight, I'm grateful.

Boo yah!

In just a little bit over a month, with the help of some good basal rates, I've been able to drop my A1C significantly! Granted, this is an at-home A1C kit, so I'm sure this number is not 100% accurate as a lab test, but it is accurate enough to tell me that I am probably solidly in the 6's these days, and that makes me SO happy!

I fully anticipate an A1C as good, if not better than this by my next endo visit at the end of September. Hallelujah!

Thank goodness for pumps, CGMs, and lots of hard work on the part of me and my diabetes team (in which I fully include my husband, God, and all of you readers, too!)

Woot!

How to Spot a Diabetic . . .

If you want to learn how to spot a diabetic from across the room, I'll give you a few pointers:

I have recently made friends with another women my age at church, we'll call her K, because that's what her name starts with, but I'm not sure if she'd want to be identified. So, a few weeks after I met K, I saw her walk into church with something attached to her arm. Could it be? Was it possible? Yes it WAS an insulin pump infusion set! I caught her attention and half lifted up my shirt to show her my pump site on my stomach. (I don't advise doing this in church to just anyone, by the way. People might get the wrong idea. ) She looked at me and gave me a knowing chuckle, and we talked D-shop for a few minutes before the service started. We were destined to be friends.

Recently, I got into her car and, as if the infusion pump sighting wasn't enough, I saw a half drunken juice box in her cup-holder. She does not have children. :) It's the very same brand of apple juice box I use to treat my lows.

So, Lesson No. 1 in spotting a diabetic is this:

The more obvious D-spotting sign is the pump site. The more trained eye will be able to see a juice box in a nearing-thirty-somethings car as an even more subtle sign.

We can drive a remote control car on Mars, but we can't get better blood sugar accuracy?

[So, it's been a while since I've participated in the DSMA Blog Carnival, I apologize. I've been a little preoccupied, with diabetes technology, actually! I recently started pumping (again) and using a CGM (for the first time), and it has been a roller coaster of a ride figuring it all out. As this month's DSMA Carinval was about technology, though, I thought that it was a fitting time to get back into the blogging game.]

Here's my take on diabetes technology, my hope for the future, my complaints about current D-tech, etc.

First, let me say that we have come quite a long way since I was first diagnosed. I was diagnosed in 1993, when you still had to wipe the blood off of your test strip before you stuck it in your meter, and then had to wait FIVE minutes to see what your blood sugar was. Insulin pumps were not the norm, and CGMs were a pipe dream. I remember when I got my first One Touch meter that ONLY took 45 seconds, and it was a dream come true! Oh, how I loved that One Touch. So, before I continue, please know that I am truly grateful for the technology I have today, because I know what things could be like.

That being said, I want to make one thing clear. Yes, 5 second glucose meters, home A1C test kits, insulin pumps, CGMs and and iPod apps galore are all great and fun and helpful to a certain extent. But, they do me a crap load of good if they're not accurate.

Did you know glucose meters are still FDA allowed to be +/- 20% off? We all know CGM technology is far from being perfectly accurate, and it's relatively new, so I'll give it a bit of a break. But, I get really frustrated when I hear all these reports from people who attend diabetes conferences where D-tech companies are touting their new and improved whatever-the-heck-product- they-are-selling, and their focus is not on accuracy but on making the design sleeker, or the interface more user friendly, or whatever. Sure, I'd love for my iPod to be able to test my blood sugar, count my carbs, bolus my insulin, e-mail my doctor, pay my pharmacy bill, and julienne my french fries all at the same time. But, if the blood test is still +/- 20% off, than it doesn't actually help me that much. And, if my insulin still might not start working until 15 -30 minutes after I inject, than it still isn't helping me gain the control I want and need.

We can drive a freaking remote control car on Mars, people, so someone PLEASE tell me why we can't have better accuracy than +/- 20%?

So, here is my dream and hope for the future. I want patients, doctors, the FDA, and the ADA and everyone else to not be satisfied with +/- 20% accuracy. I want the D-tech world to listen up and realize that while fancy apps and sleeker designs are nice, what I really want is better accuracy in measurement and insulin that acts faster. Maybe someone should call up the NASA scientists who are all getting laid off soon, and hire them to figure this +/- 20% thing out.

This post is my July entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/july-dsma-blog-carnival/

Cautious Optimism?

So I don't want to jinx myself here, and it actually might just be a function of how crazy hot it has been (like, so hot I'm surprised the media hasn't nicknamed it Hot-pocalypse, or Hot-mageddon or something) , but I think I finally NAILED my basal rates and my carb ratios.

I made a little tweak to my carb ratios a few days ago, and every since then my blood sugars have been amazing. Like, better than every before in my life amazing.

I'm skeptical. I'm just waiting for the floor to drop out from beneath me.

Waiting . . .

Waiting . . .

(Eeeek!-Super suppressed squeal of excitement!)

Lies! Lies! Lies!

Dear doctors & pharmaceutical companies:

You guys totally lie about how great all these new insulin analogs are. You have these fancy little pamphlets that come in every insulin bottle, detailing these "scientific" clinical trials that show how "great" Humalog and Novalog and Apidra are supposed to be. You tell us that we can take our insulin right before we eat, or even after we've already started eating, because it works so fast now! You tell us that we can easily get 1 hour post prandials under 140 without going low later on because these insulins don't stick around in your system that long. Oh, and they definitely only have 1 peak!

Yeah, freaking, RIGHT!

LIES, I tell you! It's all LIES LIES LIES LIES LIES!

I don't know who you did your clinical trials on or where (don't EVEN get me started on how crappy clinical trials are . . . ) but they must have had alien bodies, because insulin so does NOT respond how you say it does.

If only I'd had a CGM years ago, I might have figured out that you all couldn't be trusted to give me good information. If only I'd had a CGM years ago, I might've trusted my instincts about my own body and ignored your stupid advice about insulin action time.

And you all dare to call us non-compliant when you give us crap to work with, and then tell us lies about how it works?

Pfffffft!

All right, that's it! Dishonor!Dishonor on your whole family! Dishonor on you, dishonor on your cow . . . (name that movie!)

(can you tell I'm a little peeved right now?)

My Latest Endo Visit

I had an appointment with my endo (who I adore) today. I think this is the first time I've come away from an endo visit where I felt like she was happier about how I was doing than I was!

So, the last time I had a quarterly check-up with my endo, my A1C was 7.1. Not surprising to me. I wasn't pumping yet then and was really struggling with a nasty dawn phenomenon that was hard to deal with on MDI.

They give you these nifty cards with your A1C at my endo's office!

Since then I have gotten a pump and started CGM-ing too. While I was getting back on the pump and starting with the CGM I met with my endo's PA who does all the pump training and adjusting (and who is wonderful). Today, I had my official quarterly check-up with my actual endocrinologist for the first time since starting the pump. My A1C was 7.7!! Yikes Spikes!



I fully expected my A1C to be much higher, since the first month and a half of pumping was such a crap shoot of trying to figure out basal rates and stuff. Heck, let's be honest, I feel like it's still a crap shoot a lot of the time, but I have noticed marked improvements over the past month or so. I went to the office fully prepared to see a higher A1C, I just think seeing it on paper kind of made me realize I have a long way to go. I'm disappointed. My doctor was really positive, though. She took a look at my numbers, listened to my concerns, and we adjusted a few things. I know that my A1C will be better at my next visit, but I still feel a little deflated, because I feel like I've been working so stinking hard! I would really like to see my A1C below 6.5, and with a current A1C of 7.7 it just seems like a long way to go. Sigh.

Send some good, motivational thoughts my way, peeps. I need 'em today!

You know you're a diabetic when . . . .

. . . you have tiny dried blood stains all over your pillow cases from night time finger pricks. You can tell which pillow cases I've used and which my husband has used! Ha!

Proof

Just in case you were wondering what that CGM graph looked like on my terrible, horrible, no good, very bad day. That nice flat line at the top is when my CGM just read "HIGH" for several hours, whereas right before and after during those troughs, my CGM just read "LOW". :) Fun, fun, fun, fun!

Also, I have no idea why the picture posted sideways. I did not take the picture like that. Weird. I'm having too much of a crap day to try to fix it, so you'll just have to bend your head 90 degrees! :)

Worst Diabetes Day EVER!

Warning: This post is entirely negative and complain-y. Because that's just how awesome my day is.

The past 24 hours has literally been diabetes hell. You should see the graph on my CGM! Mountains and valleys, people! Mountains and valleys!

I've gone from 54 to 375 and back down again, over and over and over and over. I had recently made a few adjustments on my basal rates, but I didn't think it would affect me like this. I also have started taking a new kind of birth control, so maybe that's messing everything up too. I've dialed things down a little bit more on my basal rates and my correction factor to see if that will help. I think because I'm dropping so low I might be getting a liver dump in addition to what I'm treating my low with, and that is resulting in these SUPER high numbers! I have no other explanation!

I was up until 3am last night treating a low that would NOT FREAKING END! You know, one of those lows that you treat and wait 20 minutes and you just keep getting LOWER! And then you treat again, and it seems like you didn't even treat it?! And then I woke up this morning at 375. What the what?! And now, I'm low again. Awesome.

Sheesh. Sometimes this is just really hard. REALLY FREAKING HARD. Good thing I didn't have anything important I was planning on doing today, because I'm so exhausted, and feel so sick from these dramatic swings. It's almost all I can do to punch buttons on my pump to treat the highs and stuff glucose tabs in my mouth to treat the lows.

OK, sorry this is really negative. I'm usually much more up beat, but this is reality for me today, and it's just not that pretty.

But, I know that I can do this! And that gives me a little hope today.

My Particular Brand of Hypoglycemia

One of the great things about diabetes is how differently it can make people feel. One person will feel giddy when their blood sugar is high, while another will feel tired and lethargic. I had a friend who would get incredibly hungry when she had high BS.

Right now (as I'm writing this), I'm dealing with one of those interesting diabetes phenomenons. My blood sugar is dropping towards being low (hypoglycemia). I started watching my Dexcom about 20 minutes ago and suspecting something was up, because I started feeling SUPER nauseated. Like, get me to a bathroom, I'm going to throw up all over nauseated. After 18+ years of diabetes, I finally realized in the last 2-ish years, that when my BS is dropping quickly, it makes me feel like I need to throw up. And it gives me these really bad, painful air/gas bubbles in my stomach that run all the way through my intestines and end up coming out one end or the other (sorry if that was too graphic for you).Side note: Someone in the medical world please explain THAT to me! Through the diabetes OC I know I'm not the only one out there that has this happen when they're dropping fast. Awesome.

So, 20 minutes ago, when I tested and when I checked my Dex, it said I was 156. Not a great BS, not awful. But I felt sick, and I KNEW I was dropping, even though the Dex wasn't picking it up yet. Now, it says 108, with a nice downward pointing arrow, and I'm sitting here sipping juice trying to raise my BS, because if I don't, I WILL vomit. Because that's how awesome diabetes can be. It says "Oh, you need to eat to raise your blood sugar? OK, I'll make you feel sick to your stomach, because that will make it so much easier for you to eat!" (insert sarcasm)

It's like an extra sucker-punch to the gut.

And now my BS is 92, with a fatty downward trending arrow. I'm going to stop waisting glucose energy writing, and go start drinking more juice. Out of a juice box. Cuz that's how I roll.

5 minutes later: 84. Ugh. It might be a fun night.

Happiness . . .

. . . is calling up Dexcom to order more sensors, and finding out that you've met your out-of-pocket max for the year, and now all your sensors will be free UNTIL JANUARY! Guess who's stocking up on sensors?

You know you're a diabetic when . . . .

In what is sure to become a regular reoccurring feature on this blog, I'd like to present "You know you're a diabetic when . . . "

You know you're a diabetic when you're 29 years old and you keep a juice box in your purse. And drink it, with abandon.

She's more Machine than Man now . . .

That's right folks. I have officially begun my foray into Robot-dom.

I've been pumping & CGM-ing for a week!

My insurance ended up approving everything (at the standard 80/20 Durable Medical Equipment benefit cost, of course), and I received my Animas Ping in the mail about two weeks ago. Our total costs ended up being $300 for my Continuous Glucose Monitor (the Dexcom) with a months worth of sensors , and $750 for my Insulin pump + 3 months of supplies (infusion sets & tubing/reservoirs). The $750 would have been about $1400, but we got $650 in credit for sending them my old MiniMed 508 pump. Cha-ching. (Side not: can you believe $1400 represents only 20% of the total cost of that pump! Those things are expensive!) Of course, I'll still have continuous costs for sensors, insulin, and infusion sets & reservoirs, but in all I'd say approximately $1000 in start-up costs is better than most pumpers/CGM-ers probably have it!

Last Friday, I went to my endocrinologist for my official pump-start day! It was so exciting! And so incredibly easy! I thought they would be training me on both the pump & the CGM, but my endo's PA (who does all the training) said she was only a certified trainer for the pump and that I'd have to call Dexcom to set up a training with one of their trainers if I wanted it. Then she said that most of their patients actually just end up starting the dexcom themselves because they system is so easy you can just figure it out yourself. So, that's what I did! And she was right! It was SO easy to start!

So, after a week of both pumping & CGM-ing, here is my take on both:

Animas Ping Pump

I love this pump! I haven't been pumping in quite some time, so I have never used all the bolus calculators before but I LOVE that my pump does all the math for me now! And I also love that it calculates Insulin-On-Board (see "recent developments" section of this Wiki Article for explanation)! I did not have that feature in my 508! And I love that I can dose right from my meter, too. So easy! And the Animas Inset infusion set is awesome. It is much less painful for me than the Softsets I was using before, and I don't need IV3000 tape to keep it down, so the amount of space it takes up on my stomach is a lot smaller. Also, I'm not allergic to the adhesive! I was totally allergic to the soft-set adhesive and my skin would get all red and itchy every time I used it. So far, this has been like heaven on earth.

Also, and less importantly so, I think the Ping is much sexier. I like the look, feel & design of it more than other pumps out there, and that is important to me when choosing something I'm going to be attached to 24 hrs. a day. Shallow? Maybe.

Dexcom CGM

This little piece of machinery was SO easy to set up! I was nervous, because the sensor inserter was a little intimidating and scary (with the longest needle I have ever seen!), but it didn't hurt at all! I haven't even been able to feel the sensor in me at all this entire week, either. It took about a day and a half for the sensor to get used to my interstitial fluid, but after about 30 hours it was spot on. And even in those initial 30 hours it was spot on with the direction my blood glucose was trending. I have now worn it a full 7 days, and I LOVE it! The adhesive has only been itchy once or twice, and has stayed on really well, no need for any extra taping or anything! I think I could probably get away with wearing it several more days (many Dexcom users use there's for 14 days or more), but I think I won't try to do that with my very first sensor. I want to see what my skin looks like underneath, and how bad the needle poke hole is before I decide if I will try to get more days out of my sensor in the future.

So, that's where we are. I'm still getting my basal/bolus/correction ratios all figured out, and that has been a little frustrating. I've been high a LOT the past week, and have been drinking water & peeing like crazy. (No Ketones, though!) I know once my endo & I get these rates figured out, things will be MUCH better, though. So, even with the crappy highs this week, this has been an extremely pleasant, heartening and hopeful diabetes experience!

Pictures

And finally, I was going to post a picture of my stomach showing you my new robot-accessories, but after seeing a photo of my own stomach, I decided that was NOT something that was forever going to be emblazoned on the fiber optics of the the world wide web for eternity. So, just envision two plastic-y things taped to either side of my belly button, one of which has a tube coming from it running to a beeper-like thing on my hip. :) You can enjoy THAT mental image now. Trust me, it's better than the real thing.

An Update

Good news! I've been approved by my insurance for a CGM! I'm still waiting to hear back about insurance approval for my pump, but I'm assuming since they approved a CGM, they'll approve the pump too. I'm going with the Dexcom CGM and the Animas Ping pump.

I've actually already got my Dexcom in my hands! I can't believe how fast that process went! And everything with Animas seems to be going pretty smoothly, too! I always knew that I wanted the Dex instead of the Minimed CGM, because based on user reviews it is obviously the better, more accurate, longer lasting, easier to use CGM on the market out there. I wasn't sure if I wanted to go with a Ping or the latest MiniMed pump, though. In my past foray into pumping, I had a MiniMed 508, and had a really good experience, but after reviewing things on my own and hearing customer reviews of all the pumps currently available, I decided to give the Ping a try this time around. It has all the things I want in a pump, including a few extra bells and whistles that the Minimed doesn't have. And, after dealing with Animas customer service AND MiniMed customer service over the last couple of weeks, I definitely think I made the right choice. Eleven years ago, when I was on the MiniMed 508, they hadn't been bought by Medtronic yet, and from what I have heard from other patients over the past few years, which was confirmed by my recent experiences with their reps, their customer service has really taken a hit since the buy out.

So, I'm going to go with Animas, and hopefully it will all work out! I'm just waiting around for my insurance approval now. It should be coming in the next few days. Hopefully it will all get worked out in time for my CGM training/pump re-training appointment I have set up with my endo's office on April 1st!

I'm excited!

Pumping!

Did I mention that I'm officially going back on an insulin pump? No? Well, I totally am. I have been off of a pump for about 5 years now. I was on one from about 2000-2005. I went off the pump to go live in Ghana for a summer. I couldn't afford to be on one when I came back. I finally got good health insurance from about 2006-2007, so I went back on m y old MiniMed 508 then. I couldn't afford a new pump, but I could afford the insulin, and I had like a years worth of supplies left over from my first pumping stint. Then I started graduate school and had to go off the pump at the end of 2007 and have since stayed off the pump because of cost.

But, we have GREAT insurance now (because we pay out our of our noses for it) and I am going to be starting pumping next month, if everything works out. In addition, I will be trying out CGM-ing too! I'm pretty excited about that, because I've never done it before. I'm most likely going to be using the Animas Ping and will definitely be using the Dexcom.

And I'm stoked. STOKED! (does anyone say that anymore? no? . . . anyone?)

But I'm nervous. I'm nervous about being connected to TWO things. I'm nervous about the cost, I'm not looking forward to basal testing, and all those other things that come with pumping.

But, I'm SO looking forward to having an easier time of getting my A1Cs to where I want them to be! I'm one of those people who absolutely needs a variable basal rate, and Lantus is just not cutting it.

So, that's what's up, these days. Woot!

Post Script: I was originally going to title this post "Big Pumpin". You know, as some witty word play. However, I just looked up the actual lyrics to the song "Big Pimpin" and I'm horrified! I don't think I've actually ever heard that song, just the title, and it seemed like a fun little play on words. Not so fun anymore! Just know, that I am horrified by how many times Jay-Z managed to fit the F-bomb in there! Not to mention the sheer amount of women-hating going on in that song! ! Yikes spikes! DON'T look up the lyrics! Your eyes might bleed when you read them!

My Endo-mance, or, Why I Love My New Endo

So, it turns out all my worrying over whether or not my appointment with my new endo would go smoothly and be productive was unwarranted.

My new endo is fabulous.

If there was a patient equivalent of a celebrity crush, or a bromance - or in my case, a womance - I would have one for my new endo. Sigh.

She did all the right things and asked all the right questions. Her practice ran like a smooth engine. It was almost like she could read my mind and anticipate all my questions before I even got up the nerve to ask them. She used all the latest gadgets not only with Type 1 care (in-office A1C, pumps, CGMs, etc.), but also with her practice management (EMRs, in-between visit e-mail contact, on-line patient access for labs and Rx requests and so much more!). We have the same views on the controversial "to statin, or not to statin" issue. And, she even checked my feet with that little soft needle-y thing and didn't mind that my feet were sweaty and covered in sock lint!

While I was sitting in the waiting room I saw her practice nurse compassionately interact with a walk-in patient who had financial difficulties with regards to paying for medications. There was no judgement, no brushing off, and they figured out a solution right then and there! No appointment necessary!

So, right now, I'm sitting in a euphoric heap in my living room, surrounded by brochures for pumps and CGMs, trying to focus on picking the ones I want. But, it's hard to focus, because I can't stop thinking about how great my new endo is.

Sigh.

(Is this post too creepy?)

New Endo/Nervous Jitters

So, it's been almost two years since I've seen an endocrinologist. Don't judge me. I try hard not to be a bad diabetic, but sometimes the world doesn't really help me out.

My last endo experience was pretty awful. I was a graduate student, with crappy insurance coverage to begin with, and had to see a specific endo on my student insurance plan. I had no choice. And had to pay $$ out my ears to see said endo. There were many reasons my last endo and I didn't get along, not the least of which included:

• Poor practice management (messing up countless Rxs, losing my test results, making me wait HOURS for a 5 minute visit, etc.)
• Giving me no help what-so-ever with diabetes control, i.e. if you can't give me insight into what's going on with my diabetes treatment that I can't figure out for myself (after 18 years of having Type 1), I'm not going to wait hours to see you for 5 minutes to have you tell me something I already knew
• Trying to kill me with "preventative statins" (In his defense, this is a controversial subject, and he couldn't have known I would have one of the worst side-effects from them), and then getting mad at me when I wanted to find an alternative to statin Tx
• Telling me "well, we'll just have to deal with your high numbers until you can afford to go back on a pump." What the what?!!
• Misclassifying me as a Type II on my medical record & drivers license medical form, even though I've been a Type 1 for EIGHTEEN YEARS. Sheesh.
• Not understand or being willing to work with me WHAT-SO-EVER on my limited budget.
• Should I go on?

So, there was that whole experience that kept me from seeing an endo. And then there was money. Lat year, I got new insurance, and the option to see other endos, but I had a SUPER high deductible, so I avoided it, because I would have to pay the whole thing totally out-of-pocket. Luckily, just through my GP, I was able to maintain a pretty darn good A1C for MDI.

This year, we finally have a better insurance plan! I have a super LOW deductible, and made an appointment to see an endo as soon as I could! I couldn't get into the one I wanted to try until the end of this month, and my appointment is coming up on MONDAY!

And I'm terrified.

I SO want to jive with this endo. I've had amazing endos in the past (when I lived in a different state) and I want this endo to be like those. According to her practice web-site this endo's practice specializes in treating Adult Type 1s, and they have a lot of the other features in an endo I want like in-between visit e-mail contacting, in-office A1C & lab testing, a PA who is a CDE and a pump trainer for lots of different pumps and certified to do CGM training, etc.

But, what if this endo is awful, too? I am normally a highly motivated patient, when I have the tools I need at my disposal, and I want an endo who will work with me and not blame me or make things difficult for me. After 18 years of this mess, I'm just so tired of doctors and having to fight with them for what I need and want. Is it too wrong of me to just want things to be easy for a change?

So, any advice, peeps? I'm willing to give this endo a good chance, I won't write them off after the first visit (unless they do something really crazy like tell me I should try to ween myself off of insulin).

How do you all go about searching for an endo or doctor that you'll be able to work well with? What do you look for in a doctor? What questions do you ask when you first meet them?

Wish me luck. Here's hoping that things go smoothly for a change!

The Most Awesome Thing I Have Done In Spite of Diabetes Was . . .

. . . living in Ghana for three and a half months!

Side note:As part of the DSMA (Diabetes Social Media Advocacy) Blog Carnival, I'm using their prompt for this month to talk about the most awesome thing I've done in spite of diabetes. I just discovered #DSMA and this is my first time participating in anything DSMA-related, so I hope I'm doing it right. :)

Any way, back to the most awesome thing! When I was in college, I went to Ghana, West Africa to live & study for three and a half months. I was an anthropology major, and my professor/mentor took a group of students there every summer as part of a field study focusing on medical anthropology. In short, we studied different health-related topics focusing on Ghanaian's use of medical pluralism (using "modern" or "western" medicine as well as herbalisim, spiritual healing, bone-setting and other types of healing that are less common in the U.S.) It was fascinating, to say the least!

But, what I consider one of the greatest parts about that whole experience was that I was able to do it successfully WITH Type 1 diabetes!

I have to admit, I was really nervous about going. I was worried about all the worst-case scenario type things. I was worried about not having electricity and therefore a way to keep my insulin cold. I was worried about being able to take enough insulin & testing supplies to last the whole 3.5 months and what would happen if I ran out of them. But, I bit the bullet and just prepared really well and did it! I knew this would most likely be the only chance in my life that I would be able to go and I wasn't going to let a little thing like diabetes stop me!

Here's an incomplete list of some interesting/crazy diabetes things that happened in Ghana.

WARNING: This is a long post because I love talking about Ghana. And also because I am long-winded.

Going Off the Insulin Pump

I was on an insulin pump for about 5 years before I went to Ghana. I was nervous to try to navigate Ghana with a pump, all the tubing and infusion sets and batteries and every other thing that comes with pumping. Plus, I knew that Ghana was super hot and humid, and since I already have problems with humidity/heat caused sweat and infections under IV 3000 tape, I thought going back to MDI (multiple daily injections) might be a better idea. Also, and I'm ashamed to admit it now, I was afraid people might try to rob me because they would think the pump was a beeper or something (turns out I feel safer in Ghana than I do in Columbus). So, I switched back to shots a few months before I left. It was a good idea. It was easier to transport my insulin and supplies, and I do think I would have gotten a lot of site infections because it was so hot and sticky. Also, I knew that if I ran out of insulin or if it went bad, I could at least get some seriously ancient types of insulin at a big hospital in Kumasi or Accra (NPH, Lente, etc., I don't even think they had R). If I had lost or run out of pump supplies, I'd be in serious trouble. So, I think I made the right choice there for my situation.

Frozen Insulin

The home I lived in didn't have reliable electricity let alone a refrigerator. Whenever it rained, our electricity would go out, and we were there during the rainy season, so . . . yeah. Some other students in our group were living in a guest house which had its own generator, was in a more electrically reliable neighborhood, and had a fridge. The guest house graciously let me keep my insulin in their fridge, and one of the students that stayed at the guest house agreed to check up on it for me from time to time when I couldn't. Well, one day I was there visiting some friends, and decided to look in on my insulin, only to discover that it had been put in the FREEZER! Yikes spikes! My entire supply had been frozen! I spent about 6 hours fretting about whether or not I should take it, if it would be safe, etc. That night, one of the other students (who had a cell phone that was capable of calling internationally) was talking to her mom at home in the states, and told her what had happened to me. The mom said "well, hey, I'm at Costco, so let me stroll on over to the pharmacy here and I'll hand the phone to a pharmacist and Erin can talk to him and ask him what to do." So, I talked to a Costco pharmacist in Utah from Kumasi, Ghana. The pharmacist was a little freaked out that I was calling from Africa, but after their usual "must cover my arse" warning about not using insulin if it has been too hot or frozen, they said "you'll probably be fine, it just might be less effective." And, I was fine. I learned in Ghana that insulin can get very hot, and freezing cold, and still be good enough to use. Don't get me wrong, I'm not saying that you should go expose your insulin to extreme temperatures, all I'm saying is that if your choices are between taking nothing and taking insulin that has been frozen, just take the insulin.

Stranded In Burkina Faso

So, while I was in Ghana I took a week off of my research to visit Burkina (the country north of Ghana) with some friends from my program. It was an amazing trip, and we saw amazing things. And all I took with me was a small back pack. :) My problems in Burkina weren't diabetes related, but they could have ended badly, if not for some ingenuity and a miracle. We took a mo-ped trip about 25 miles outside of one of the towns we visited to go see some peaks and waterfalls. We made it out there just fine, but on the way back our mo-ped broke down. BROKE DOWN! In the middle of no-where. Literally, there was no one around for MILES! And, we'd ran out of clean water. Awesome. Well, good thing I was wearing a hair elastic that day, because my ingenious friend managed to fix the bike with my hair tie and we made it back to town. Soon after we got back to town, and were getting ready to leave to head back to Ghana, we realized that we were about to run out of money. Pretty much everything in the smaller towns in Ghana & Burkina runs on cash, and we didn't have enough to get home. Just when we thought our luck had run out, we found out this tiny little town in Burkina had an ATM! It was literally in this cement block room in the middle of a field with nothing else around it, but it took my VISA! Everyone else I went with had American Express, so it's a good thing I brought my card! I'm pretty sure that ATM machine was put there by God. Like, if I went back there today, I doubt there would be an ATM there, and no one would ever remember there having been one there. Seriously, why would there be an ATM machine in that tiny little town? It makes no sense, but I'm sure glad it was there!

A Note About Food

Oh, man the food was good. And spicy. And sometimes a little gross. And took a little getting used to. And it ruined pineapple for me for the rest of my life. There is NO pineapple in this world as good as a fresh Ghanaian pineapple. Mmmmmm. But, I digress. Diabetes-ly speaking, it was a little difficult. The staple was this stuff called fufu, basically starchy cassava & cocoa yam all smashed together into a mashed potato-like paste, but with more starch and less flavor. There were lots of stews made with fish, or goat, or chicken, or who-knows-what-kind-of-meat that were all served over the fufu. There was also lots of rice too. So, all that starch was a little hard to deal with at first, but it was not that bad since I was getting a lot of exercise too. I did find a lot of things I was used to eating too, like bread, juice boxes (excellent for lows), and cookies. :) I tried to stick to clean, "bagged" water (clean water comes in these little plastic sacks) and stay away from things that might make me sick, but I definitely was sick a lot there. Most of us weak-stomached Americans were, and I (as well as everyone else in our group) pretty much had diarrhea for a month straight, but that was not because I had diabetes. You got used to it. :) TMI? It really wasn't that bad, and strangely enough it didn't really affect my diabetes very much, I just made sure to drink water like crazy and stay hydrated, and I was just fine.

So, yeah. That really long post was all about the most awesome thing I've done in spite of the Big D. It was amazing and eye opening in every way that it should be. And, I became a much more confident diabetic for having gone. Sorry it was so long! I really like talking about Ghana. :)

Take THAT diabetes!

This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/introducing-the-dsma-blog-carnival/

Judgement, Skepticism & Ignorance

Oh, man, I've been a little sad the past few days about an "incident" my husband and I had the other night.

We went over to another couple's house for dinner a few nights ago, and somehow got on the subject of health, eating right, etc. Well, turns out this couple are WAY into natural health remedies, as in they probably haven't used modern prescription medicine in years, and tend to treat any problems they have with diet, supplements, and essential oils. Let me say first thing, that I'm not opposed to any of that. I believe you should treat whatever you can naturally, and that diet and exercise play a huge role in keeping you healthy. But I also know that there are certain illness like, oh, Type 1 diabetes for example, that cannot be treated by supplements or herbal remedies, or whatever.

While we were having dinner, the wife (who knows I have diabetes) started saying things like, "well, you're not going to go on that insulin pump, are you," and "well, I assume you will want to have kids eventually," and "well, have you tried going off insulin?" Usually in situations like this, I just simply educate people on how Type 1s must always take insulin, that you can not control Type 1 with just diet and exercise, and that not taking insulin means I will die. I did all of those usual myth-dispelling things.

The thing that got me, was that both she and her husband seemed to not believe me! They seemed really skeptical that I had to take insulin (even though I explained the differences between Type 1 & Type 2), and seemed a little judgmental that I'm still taking insulin and that I actually want to go on an insulin pump. I felt like they just didn't believe that I was trying hard enough or eating right or exercising or something. Granted, they are about 30 years older than us, so maybe age has something to do with it, but in my experience, people of their generation seem to be really tethered to modern medicine, not to "natural" medicine. So, I was really surprised and disheartened when they seemed skeptical that I had to take insulin the rest of my life. I felt really judged, like I was somehow allowing myself to stay "unhealthy" because I'm still using insulin.

So, I didn't know what to do. The conversation kind of fizzled out after that, and my husband (who is amazing) did a great job at trying to help myth-bust too, and then change the subject when it didn't work. But, I just came away feeling very judged.

It just makes me realize that we have a lot of education to do in the diabetes community! It also made me realize that there are just some people out there who will not be moved from what they think they know, and that there might not be anything you can do about it.

Any suggestions, peeps? How do you handle situations like this?

Resolving diabetes.

While I wish my diabetes would just freaking resolve itself, it doesn't seem like that is ever going to happen in my lifetime. Instead, I will have to work on resolving things myself, I suppose. So, here for you is a list of New Year's resolutions regarding diabetes:

1. Lower my A1C to at least the mid 6 range.

• Test at least 8 times a day
• Log tests and food and exercise
• Correct if high
• Correct with glucose tabs if low
• Exercise more often (this goal is expanded upon in detail on my personal blog)

2. Visit an endocrinologist regularly (This year I have much better insurance, and a lower deductible, so this should be easier to do!)

• Find an endo that takes my insurance and that I jive with (no more putting up with crappy endos for me!)
• Make an appointment, and then keep in contact/coming back as much as they want me to and as much as I can afford

3. Get Other exams that I should be regularly getting as a Type 1 diabetic:

• Dude, it's been a long time since I've seen a dentist.
• I need to see an eye doctor to get my glasses Rx updated.
• I also probably need to see a retinal specialist to get my tiny bit of retinopathy checked up on.
  
• See whatever other doctor my endo suggests I see.

While I have been working my you-know-what off for the past 5-ish years to get in decent control while being under- or un-insured, I now have the means to get in even better control, so I'm resolving to do it!

Wish me luck!

What are YOUR diabetes goals this year?