Tuesday, November 9, 2010

6 things i want you to know about [Type 1] Diabetes~

Today is national D-Blog Day, in which all of us D-Bloggers (aka, Diabetes Bloggers) are invited by the wonderful Gina Capone over at DiabetesTalkFest to blog about the chosen topic for that year. She's been doing this for 6 years, and I feel honored and excited to be invited to share with you....
just how much diabetes sucks.
Well, and a few other important things....:)

In my case, we're talking about Type 1 Diabetes:

Ya, that's right. TYPE 1 Diabetes. For the love of God, get it straight.
I don't have Type 2 diabetes. I don't have Gestational diabetes. They are all separate, and if you have one, you can't have the other. I won't bore you with too much detail, but here's the gist:
-type 1 diabetes is an Autoimmune disease. Just like Multiple Sclerosis or Lupus, the immune system begins to attack a certain part of the body because...well, that's the million dollar question, isn't it? But the point is, it attacks the insulin-producing beta cells of the pancreas and voila! No.More.Insulin. Without insulin, you die. Doesn't matter if you're a dog, a pig, a horse, or a human....you'll kick the bucket. Why? Because insulin is literally the only "key" that opens all cells up to receive sugar---which is our fuel. Without sugar, we're like a car that runs out of gas. Without gas a car dies, right? Well, don't tell me about some special fuel (herb, drink, exercise, lifestyle modification) that my car can run on instead of...*ahem* You're getting the picture, right? If the door to my car is locked, your "special" car key won't open it. If it's the wrong fuel, the car won't start. Kaput. End of story: I don't make insulin and every person absolutely needs it to survive.

2. I didn't "do anything" to get Type 1 Diabetes.
I didn't eat too much sugar. I didn't go on a weird diet. I didn't hide an out-of-control eating disorder. I wasn't overweight. I could've been a triathlete (and know some people who are) and if my body began to have the Autoimmune reaction to my insulin-producing beta cells in my pancreas...even then, in such an "elite" state of health, I couldn't have stopped it. I was a stick-thin student who ate a healthy diet and biked everywhere when I got diagnosed. And guess what I was after? A stick thin student who ate a healthy diet and biked everywhere. I'm still me. No one asks for a disease. No one deserves a disease. So please stop trying to rationalize it and figure out what I "did wrong". Oh, something went wrong alright, but it wasn't anything I had a say in, trust me.

3. My Type 1 diabetes did not get "really bad", causing me to go on the insulin pump.
Insulin pumps are one of the most magnificent inventions. They mimic the body's output of insulin more closely to that of a non-diabetic's body. I won't get into all the boring details of what pumps do, but let's just say they are very complicated---and that's a good thing. Unlike daily injections of insulin, which are just sometimes [literally] a 'shot in the dark', insulin pumps allow people who don't produce any/enough insulin to set up the way it infuses the blessed little hormone into their bodies more closely to their personal needs. A child's needs are different from an adult's. A pregnant woman's needs are different from a non-pregnant woman's. An athlete's needs are different from a couch-potato's. But at the end of the day, if they all have type 1, they all need insulin. They just need it infused in different ways. This is the beauty of the insulin pump---it makes my quality of life more like yours. :)

4. If I'm eating a treat, don't tell me I can't.
Type 1 diabetes, as we discussed before is all about helping cells to open up to get that fuel (sugar) in. But what's sugar? Sugar is carbohydrate. Read: long chains of carbon [carbo] with hydrogens [hydrate] attached to each one. They're big molecules. The point I'm trying to make is that it wouldn't matter if I only ate salad for the rest of my life, there's still carbohydrate in lettuce. Think of other [higher] carbs you know well, though: bread (including whole grain), pasta (including whole grain), potatoes (not french fries), oatmeal, fruit, milk (lactose, still a sugar!), ...even those spelt-granola-whole-grain-blahblah-muffins you might love. I listed a lot of healthy ones because why? Because they're all still carbs. Since we can't process any carb (sugar) without insulin, it doesn't matter if we eat the healthiest of the healthy carb-options (which, as we all know, is certainly the best way to go!) we all still need insulin to break it down. So what I'm saying is, everyone should eat in moderation. Everyone should get their foods from the most whole, healthy source possible---especially carbs, considering all of the refined-carbs we're all faced with everyday: candy, cookies, fries, breads. So, if I eat a healthy, balanced diet and you see me enjoying a cookie...please don't say something stupid like, "oh, you can't eat that" or I will have to pour the tea I'm enjoying with my cookie over your head. Haha, just kidding. But really, don't be silly. You know better. You yourself knows you should eat a healthy diet and that everything in moderation is about as true of a statement as we can get when it comes to healthy living. Because we now know what's pretty much going on in the body of a Type 1 diabetic, we also now know that while they need carbohydrate to survive like everyone else, they need insulin to cover whichever one they eat. And yes, carbs should be healthy carbs. But at the end of the day, I still need insulin for any carb I eat, so go easy on me and know that it's ok for me to have some treats.

5. If it seems like I check my blood sugar a lot, it doesn't mean I'm "not ok".
Knowing what my blood sugar number is helps me to make decisions about my food, my activities, ...my state of being, so to speak. And, because my state-of-being is being a Type 1 diabetic 24 hours a day/7 days a week for the rest of my life (unless there's a cure, but no one's holding their breath) I need to know what the heck is going on! Let me put it in easy terms: studies show that those who check their blood sugar more often have better control of their diabetes. Because that person knows what the heck is going on with their disease at the moment. What does that mean? Less chances of emergency situations and also long-term complications; better chances of a healthy life, a long life. And that's what we all want, right? :)

6. Diabetes royally sucks, it makes my life complicated and difficult. But...
diabetes has also taught me a lot about myself, about chronic disease, about self-advocation, about health literacy, about empathy, about....EVERYTHING!
Would I give it back? In a heartbeat. But some of these lessons, these experiences...the situations in which I learned how to be stronger and more determined about dreams, goals, hopes, expectations for my life...I wouldn't have without this beast of a burden. So just remember, some days I can be incredibly frustrated and upset about this disease that so randomly chose to come into my life. But other days, I have these moments where I'm like,
You know, I [might've] not felt as much compassion had I not been diagnosed with Type 1.

We live and learn. We grow and change. And as my little profile section says up there, "inflexible people become self-righteous and boring", I believe so strongly in my heart that I can still do anything I put my mind to with this disease. Even though sometimes it seems like my body's been invaded by aliens....;)

Sunday, October 24, 2010

let's get personal, dearest littlebird~

hey little guy,
You'll never know how much we love you. I hope you will. You are so wanted, so planned, so hoped for, so dreamt of...right now you're the size of a mango according to BabyCenter.org. (strange, they always give size comparisons to fruit for the pregnancy progress reports, haha) so I'm not sure how much you can tell about me, your mama, yet. But I hope you can at least tell how much we talk about you, how much we hope for you, and...did I mention, love you?
You see, your little mama's adopted. I've never met another person that looks, sounds, walks, or talks like me. Having you, with the man I chose to be with the rest of my life and especially because I knew he'd be a great dad...well, let's just say I've dreamt of your face for a very long time. I can hardly wait for the next 4 months to pass, when I can hold you up to my own silly face and say, why hello there! my first blood relative!
When I got diagnosed with type 1 in 2008, strangely enough, the very first thought that went through my head as the doctor said it was, does this mean I won't be able to have kids? My mind literally started racing. I knew what type 1 was, but I didn't know anything about having a baby with it, (Steel Magnolias, anyone? Boy, do we need better depictions of people with this disease in film or what?!) There I was, in what was supposed to be my last year of college, taking my hardest load of pre-medicine classes, so many dreams of working as a Family Med doc for the impoverished---and being sick as a dog (no, sicker; more like dying like a dog) and I felt like everything was flashing before my eyes. I even started thinking about things I hadn't thought about in anything but an abstract way; things like kids.
How will I reach my goals?
What about kids?
What the hell am I supposed to do with having type 1 diabetes?!
It was the biggest, are you kidding? moment of my life. But no, they weren't kidding. I'll let you in on a secret: I held it together all day long in that hospital, cracking jokes like I always do when people are freaking out (which I could tell they were) and acting like it was all gonna be ok for MAC, your dad. Well, I was so relieved when everyone left and the docs finally put me in a room for the night, stopped poking and prodding me (even for an hour), relentlessly telling me my sugars were still running high (duh) and not letting me eat, even though I was [literally] starving.
When they put me in that room and shut the light off, I curled into the fetal position and cried my eyes out.
I waited all day for that moment.
My thoughts raced around everything I thought I was losing (no, not dessert). I feared that everything I'd worked for---school, living true to myself, traveling, trying to become a well-rounded person---was all for nothing. You see, I always wanted to be a mom. I wanted to be the best mom I could possibly be and thought, how will I do all of this at once? I was 28 when I got diagnosed, it wasn't like I had another ten years to ponder how to go about it all.
Within a few months, the wonderful docs I had began gently bringing up the issue of having children. Taking my age into account, they asked if we wanted them and how it would be better to have them sooner than later (aka, after all my beta cells stopped helping even the tiniest bit). At first, I was in so much shock, I didn't know how to respond.
Me? Have a kid? Soon?
But that's when it hit me.
We only live once.
This one doc said, "I know this is hard to hear right now, but really, grad school's always there. But the opportunity to have kids...for women, that's not an infinite opportunity."
He was right.
Sure, I could adopt. I love adoption. I'm all for adoption. Hell, I'm adopted.
But again, I'm adopted. I don't know what it's like to have a blood relative around. It was important to me to at least try to have a kid of my own before opting for adoption. Maybe that sounds weird to some people, but not to an adult female adoptee.
So we started the slow process of planning a pregnancy with a disease that is inherently toxic to pregnancy: imbalanced blood sugar.
I fought the pump for a long time. It freaked me out, the idea of being "plugged in". And then, I got so sick of daily injections, I reached a point where I was willing to give it a shot (er, no pun intended). I'm so thankful I did. I started the pump in October 2009, all with the hopes of getting some better balance...for a pregnancy.
I spent the early part of 2010 finding my OB, my perinatologist, my pregnancy CDEs; all while keeping my blood sugar in balance. It was so overwhelming! As soon as we got the green light, we hopped into bed! (TMI: haha!)
And here we are now. Months later, expecting you, healthy so far. I have no regrets, no sadness anymore. In fact, I can honestly say it's all for the best. I'm even more empathetic to those in need, those with chronic disease, people who really struggle with their health, than ever before. Sure, it took me a while to adjust to the idea of flipping my plans. But that's also something type 1 has taught me:
You can do everything. You can work around everything life hands you. You can flip your life's plans around and it's no big deal. You never have to stop--- dreaming, living, loving, learning. You can do it all and still make time to check your [often annoying] blood sugar. You can have your cake---and eat it, too!
That, my little man, is what I hope I give you the most: a sense of adventure and ease and that you should never, ever, ever let the fight go out of you.

Thursday, October 21, 2010

week 21: things go wrong, things go right~

I can be really hard on myself.
Let me repeat that for effect:
I can be really hard on myself.
Throughout this week, I started to see my numbers transition in that way everyone warned me about, but I feel like that's all I've been referring to in my posts:
wow! Things are changing so fast!
wow! Things are so hard to keep up with!
And then I talk with my pregnancy CDEs and realize....this is it. This is me, pregnant.
And you know what?
We're doing ok.
If you're reading this, planning a pregnancy with type 1 diabetes---freaking out like I was a year or so ago, trying to understand this beast of a disease and asking yourself, "Holy crap, this sounds really, really hard, how the heck am I gonna manage this?"
Don't freak out.
I was so worked up at times, so mistrusting of myself. So overwhelmed at what my doctors said, my friends said, the research said.
The bottom line is (and I want you to trust me on this):
You can do this.
What is hitting me is that the best way to make a healthy type 1 baby is to get that A1c in range. Before you get pregnant.
(There's a lot of arguing about what number's best. Some docs say below 6% [hello freakishly scary lows!], some say 6.5% and below...well, Kerri Morrone Sparling over at the incredible Six Until Me blog had an A1c of 7% when she conceived, and her little gal is nothing but perfect. It dropped significantly due to the nature of the first trimester, but still, you get my point).
I sometimes get so worried about Littlebird when I have spikes or lows, and forget what my OB and perinatologist did when I came in for my first visit:
No, really.
They were so relaxed. Just wanted to touch base. Shake hands. Congratulate me on the baby. And then congratulate me on my A1c and say,
Of all the things you could've done right, it was get your A1c in range before conception.
It's all about the average, they said. Sometimes I'm not sure I believe this. Sometimes I think I don't want to believe it. How is it possible that it all comes down to an average? (ie, what if you're running between 200 and 50, of course your averages are gonna come out skewed somewhere in the middle...) Honestly, mine weren't like that. I conceived with an A1c of 6% and it was relatively what the EAG Guidelines suggest: an average of about 126-130. But that doesn't mean I didn't have my share of spikes and lows. They just weren't like that all day, everyday, every number. And now, as I enter my 5th month, this doesn't mean I haven't had my shares of spikes and lows.
But somehow, the experts are right. Overall, Littlebird is floating around in a blood glucose average of around 6% still (we'll see if I'm right next week when I get it checked again) and the ultrasounds are all showing him as growing smack dab in the middle percentile: not too big, not too small. So far nothing weird is going on with the anatomy of his heart, his spine, his brain; all the things diabetes could have a negative impact on had it been out of control before conception.
Who knows who's right at the end of the day about what makes the most "perfect" conditions [insert slightly sarcastic laugh here] for a successful type 1 pregnancy...but we can all guess the basics, to be sure. But you know what? I'll take what I've got so far. ;)

Friday, October 15, 2010

Backblogging week 20: i'm getting high, er, you know what i mean~

Wow, that picture looks no different from last week's . Sometimes I wonder about these angles....I swear, in real life it's like I'm getting huge! Well, just in one spot, haha.

So this week, hmmmm, a lot like last week, I struggled with getting high again. Haha, it sounds like a confession in tokin' up. Uh, no.

I saw the CDE again and we began having evening phone calls where we'd see if the highs were a fluke (ie, wow, that was high. Let's change your site first and then see if it's hormones or just highs.) Such a fun thing to wait out. Me, sitting there, picturing Littlebird floating around in a bowl of sugar. Homemade, straight from me to you, buddy!
No, really.
We've been correcting and making enough changes that my averages are still stable. But it can really freak a gal out, no matter what your doctor and CDE tell you, i.e.:
Complications [can] arise after the A1C is over 6.5. Even then, this isn't in stone.
Great! What is in stone then?!
The CDE also told me that in the 7 years she's been leading the program at this perinatology center, she has not seen one case of diabetes-related birth complications in someone's baby. Phew. That was really, really, really good to hear. Actually, it totally made my day.

Another strange issue I dealt with this gloriously fun week of 20, was that my insertion sites can literally just fall off. No joke. People mentioned it happening, but I was like, How does your site just "fall off"? It's inserted! However, something's going on with your skin or something because the adhesive literally just...fails, and then poof! your site is out. Just like that. My CDE said it's very common for your sites to only last 2 days. Great. We all know how much fun site changes are. Hey, but I'll take it over multiple daily injections. Those suuuuuucked.

All in all, Littlebird and I are doing well. I finally felt him---it's still very slight. Just like little hello taps. But it's the most amazing thing; it really is. Also, while I stopped wearing the CGM because it made me bonkers (I was catching all my highs and lows long before the device would-- all that beeping made it my enemy); I may give it another try as the 2nd trimester progresses. So far though, checking my BG 12-15 times a day has been just fine to catch anything...the big thing is getting a hold of those post-meal numbers---are they high, are they low? and just taking care of it. I'm also trying to stay as active as possible and find some exercises specific to active labor (my approach) like extended squats and back exercises. Wow, it's so exciting how we really are working towards this one day---only to find that the party's only just begun! Oh my, how I can't wait to meet him!

Tuesday, October 12, 2010

Backblogging week 19: stability? eh, not so much!

During the first part of week 19 I struggled so much to keep my numbers in control. With me being the perfectionist that I am (not a perfectionist-friendly disease. Let me take that further: this is the absolute worst disease for a perfectionist to get) I tend to get into this self-blaming cycle where I continue to ask myself "what I'm doing wrong" (even when every damn thing was right). But I have the most wonderful CDEs over at the Center for Prenatal Development. The one is like, "I've been doing this a long time, Emily. You need to remind yourself that this is just pregnancy and diabetes. Fun, huh?"
That's one way to put it!
What's happening is that every few days my stable numbers then start to go bonkers again. Higher or lower, I start to really struggle with any food (salad, you're supposed to be my friend) any situation (walking around a festival: supposed to help, right? Nope) and even scenarios I gave no mind to before (being on the phone for a work meeting for a really long time made me crash just as much as if I was uh, there.)
Every 5 days now my numbers clearly need assistance. And it's all so slight sometimes. But I'm officially in the hardest part of a type 1 pregnancy: the 2nd trimester. This little guy's growing in size. Size means more insulin. More insulin means resistance. More resistance means ohhhhhhhmyyyyyyygooooooood to me. As active as I am, as healthy as I eat, I still need so many adjustments merely due to the hormones---which are all helping Littlebird to grow like he needs to. Gee, imagine if I had a working pancreas. Thanks, Peabody.
So by the end of the week, the perfectionist in me was having another bonkers situation and uploaded my CareLink data to my CDE to look at. She just made the slightest change in my insulin sensitivity and wow, it really helped. To think I'll possibly need adjustments to my pump every 2 days toward the end of this trimester just blows my mind.
The human body's fine balance of fragile and resilient function is nothing to be scoffed at. Imagining what a nondiabetic woman's body is capable of doing completely involuntarily truly amazes me right now---even as I attempt to mimic it as best as I can. Phew. But what also amazes me is how resilient these babies are. I mean, let's be honest. He's not in the "best" of conditions in there. Oh, I know, I know---my A1c going in was prime, my averages are still stable...but technically, he's dealing with a lot; a lot more than he should have to. But he's alright! (I'll tell him this when he's having a hard time in life: You can do it! You made it through that big test way back in 2010, remember? What? You don't? :) And this fact---that so far he is able to withstand a less-than-perfect environment---when even in the best of circumstances women have miscarriages for reasons only Mother Nature will ever know---just humbles and amazes me.
Sometimes I get so frustrated I feel like I'm holding on by a thread. But then I think of our little boy and how hard we're working for him and I just...well, can't wait to introduce myself.

Monday, October 11, 2010

Backblogging week 18: a really bad photo and oh my, am i domestic or what?!

Wow, behind on blogging again.
Surprise, surprise.
I'll keep this post short, since uh, I'm two weeks behind and there's really only one thing to tell you of amazing significance:

We're having a boy!

Yes, yes, by now many people already know the exciting news because I'm better at using facebook than I am at writing my own damn blog. But that's besides the point. The point is that he's doing really, really well (spot on average, not too big, not too small---hey, let's just say that size does matter with babies who have type 1 mamas!) and the anatomical ultrasound showed nothing significant...except, of course his little "boy parts" (as the perinatologist kept saying...I'm like, you're a freaking perinatologist. You should be comfortable with the terms vagina and penis by now, right?!) Haha, but seriously, it was amazing, and as usual, this little mama got tears in her eyes looking at her little one. My son.

Tuesday, September 21, 2010

Backblogging week 17: walking and randomness and taking it all in~

Time is flyin' and this little one is growin' like crazy!!
According to the website I follow, Littlebird's the size of a bell pepper this week. So fun!

This week was pretty busy. Great, but busy. I'm still doing massage therapy, maintaining my work with refugees, and also helping military members access mental health services through the Civilian Medical Resources Network (please support these two wonderful organizations if you're of the mindset!)

I have this wonderful friend who lives south of here and came up on the train to spend the day in the Q with me. She is such an amazing and incredible human being. What was really great, too, was how well my blood sugar cooperated with me that day. We just spent the day walking all over the place, taking the bus all around to do our day of shopping and movies and the like. I'm always amazed at how merely walking everywhere does my BG good. I'm a pretty active gal, but if i could just walk all day, I'd never spike over 120, haha. Of course, life is happening though and we can't get everything we need done by walking all over town.

**As a sidenote, I'm sitting in my favorite cafe in town blogging, and just saw the most beautiful pregnant woman walk in. Wow, she looks so great for like, 8 months!**

After the basal changes of last week, they're still holding pretty well. Any spikes I have are coming down fast with correction. This is hard for me still, though. I blame myself for every little thing that "goes wrong", forgetting that this is the nature of the disease: to keep my body in a state of constant, difficult flux, unless I just do my best at calculations and corrections. Which is all we can do, right? It's not easy, but I look at my averages and realize that we're more than hanging in there.

I still have yet to feel Littlebird. Kinda bums me out. I know I'm only in the 18th week as I sit here and write this, but I can hardly wait. I imagine it to be like a wave, coming over me....Hey mama! I'm here! Just waving from in here to say hi!

Yes, I'm strange. But this last week it's all I can think about, as I get closer and closer to feeling the baby. As my belly expands, it still seems alien...like maybe I'm just getting chubby, haha! So I'm looking forward to my first butterfly kisses inside my tummy from my little one. :)

Tomorrow, I have my 3rd ultrasound. I'll try to post week 18 IN week 18 (haha) instead of doing all this "backblogging". I've read some posts online that say some women find out the sex before the 20 week mark. Wow! Tomorrow I could find out what we're having!!
There's something about calling this little one by name that means a lot to me. But I'll be happy with whoever we get. I love kids, boys and girls a like. 'Cos remember, they all grow up into men and women, and I can think of all the wonderful things I'd like to do and share and talk about and learn about with my adult child, too! :)
Hopefully Littlebird'll cooperate tomorrow and we can do just that. :)

Saturday, September 18, 2010

Backblogging week 16: keeping it real, keeping it safe~

Whew! People aren't kidding when they say how fast pregnancy starts to go at some point. I'm kinda starting to freak out, to be honest. I feel like I have so much to do and am barely starting the "to do" list, haha. I thought I'd use this picture we took in our backyard, since the belly shots get a little weird sometimes. I think of taking 24 more of those shots and wonder if my readers'll think I'm merely a delusional decapitated diabetic. :)

This last week of 16/17 was pretty rough. The placenta is finally starting to truly release its hormones specific to er, insulin resistance (CAN WE SAY FUN, PEOPLE?!) making my control suddenly very difficult. My post-meal numbers suddenly began to skyrocket---even when I got so frustrated one night I merely ate an avocado and tomato salad for dinner...only to end up with a BG of 265. HOLY CRAP, BATMAN.

But as soon as I saw that it was a pattern and not just some fly-by-night bolusing mistake, I thought "Hmmm, Peabody, I think we're in for a basal change." I downloaded my pump data (Medtronic uses "CareLink"; it's not too bad!) and my CDE wrote me back that very day telling me, sure enough, to up my basals. She gave me the numbers and we changed them to an increase of about 10%. Phew. Things are a lot better now; I had some yummy fish tacos last night for dinner and my BG never went above 101. That's more like it.

As most first time type 1 mamas, I'm a royal mess right now. Every little shift, every little change, every BG that surprises me (high or low) causes me to rub my belly, apologize profusely (which, anyone who knows me, knows I do too much of already) and literally get tears in my eyes. Ok, the hormones don't help, but diabetes really throws an added wrench into things. As my CDE said, "we can't compensate preemptively for hormonal fluctuations, so we're forced to wait it out and see what happens, always staying on top of things to make changes as soon as we see a shift." And boy, do we stay on top of it. Like every 3 days, I'm downloading data for her to look at. Yeesh! I'm just glad we even know as much as we do now, as often as we type 1's get frustrated with the state of having the disease in this medical era. Think of the Diabetes Dark Ages, when the disease even freaked doctors out so much, they just said, You can't have children. And the women that tried to...well, it wasn't a pretty 9 months. Some even died trying. We are so lucky to be out of those days. Our babies are really no different now. I'm so grateful for that team over at the Center for Prenatal Development; amazing women there.

When I saw my superwonderful OB this week, he told me to keep focused on the Big Picture. He was like, "your A1c's are excellent [6% or less], your meter averages state the same, you're testing like crazy...your baby couldn't ask for more!" I really needed to hear that this week.
It's a helluva disease to try to be pregnant with, but I'll take the end result over playing it safe and not even trying. :) When I think of how the reward is a baby---a baby!---I just grin like the biggest dork, get teary eyed (how many times am I gonna admit to this in this particular post?!), and think about the next step, like: what exercise do I need today? What is the healthiest thing I can make for dinner? ... and of course, holy crap I still have so much to do! :)

Friday, September 10, 2010

Backblogging week 15: my wicked little CGM~

Uh-oh, I'm falling behind again on my blogging duties. I promised to be a good blogger during my type 1 pregnancy and ta-da! Here I am, back to my old ways. :)

Wow, from that picture, you could say that I'm really finally starting to show. This is so beyond exciting, being my first kiddo and all, so I could probably blog on and on about all of the ridiculousness that makes up my mushy excitement.

But I won't. :)

My middle of the night lows were still a HUGE problemo for me up until the end of the week when my CDE turned down my night basals even more and I myself realized that I could actually have a half a peanut butter sandwich before bed and not wake up any higher than 80. Not too shabby. We'll see how long it lasts, though. You know how these things change so fast!

Also, I told you how I wasn't getting any sleep because of my CGM's set thresholds screaming their lights out at me all night long: Ohhhhhh, we're dipping, Ohhhhhhh we're low. Ohhhhhhhhh, we're moving up!
Yes, I can hear you buddy. All.night.long.
But then I'd wake up and look at the graph and it pretty much looked like this:


(With a tiny bit of variability, here and there.)

So, I hate to admit this, but I'm taking a break from the darn thing. I'll put it on next week. Maybe I can wear it every other week? We'll see how long I last considering that I may actually be missing certain highs now. I do check my blood sugar like a blood-sucking fiend (12+ times a day) so I can't imagine that I'm missing that much. Wonderful Cheryl Alkon, who wrote the fabulous book "Balancing Pregnancy with Preexisting Diabetes" told me she's going nuts with her CGM, too. (She used me as a blurb on the back of her book! Can you believe it?! I'm a blurb! On the back of a book! :) And Elizabeth Edelman over at Diabetes Daily (who had the most amazing natural birth experience with Type 1---Cheryl interviewed her for her book) told me that she got so crazy with her CGM she just took breaks and eventually took the darn thing off in the 3rd trimester. Yeesh! But the key is of course, to just test like a madwoman. Well, a madwomanmama--desperate to keep her wee one healthy. :)

Wednesday, September 1, 2010

week 14: pregnancy is complicating my diabetes~

That pun was most definitely intended.
Before I got pregnant, I felt so on top of this disease. Challenging as it was, the pregnancy factor was in the plans, but it sometimes felt far off. Like it was a separate issue. And yet, everything I was doing---all the extra testing and doctor's appointments and research---it was all with the goal of making a healthy baby. My type 1 wasn't a piece of cake, but I certainly felt more intuitive about it on so many levels.
Then Littlebird showed up.
Everything about my disease feels flipped now. I'm still doing well, but sometimes with the freaky lows and rebound highs, I get so worked up about my diabetes I forget I'm actually upset because I'm pregnant with diabetes. I know, weird. How do you sorta forget you're pregnant? When everything about the baby depends upon a 24/7 disease, that's when you strangely forget.
And then you go, "oh my gosh! How's baby?!"
When I saw my superwonderful OB and my superawesome diabetes educator last week, I expressed my frustrations with how nonintuitive making adjustments had been lately. Before, I'd confidently adjust my basals and meal boluses for weird numbers, but with all of the lows, I'd become terrified of the meal bolus. Exercising had become something to be afraid of. We've turned back everything to the point that I'm down to about 9 basal units a day. I go to bed with a good number, and still wake up (literally) all night long with my CGM alarms going off, screaming at me that I'm going low. Even though I went to bed feeling snuggly at a comfy 130. I can't drink enough juice to keep my night numbers up. Lately, I've been pretty tired when I wake up due to treating all those night lows. Oy.
But my providers tell me I'm doing fine, my bloodwork's fine, baby's fine. You're finefinefine. But every time I go low, baby goes low. That makes me sad. And angry. And just plain freaked out. I think of how awful I feel when I go low and I just pat my Littlebird bump and say I'm so sorry, mama's doing her best. Then I sit down and start doubting myself: Am I doing my best? Am I just overwhelmed? Why was I able to "get it" so well before and now feel like I'm "messing up" a lot?
I know they're right. I'm correcting as fast as things go wrong. This is the nature of the disease. I'm not going to have perfect numbers 24/7. I have to remind myself that every day, women with type 1 have perfectly healthy babies. Times have changed. Now we can do this, with the help of a lot of wonderful biomedical technology. But it doesn't mean it's ever going to be easy. Just easier.
Sorry if this post sounds a little down. Really, I'm blessed things have worked out so well so far. But it doesn't change the fact that I'm a mama trying to keep her body healthy so baby's healthy. And it's so worth it! All I can say is that I'm so very grateful for having such a great team of specialists who deal with this everyday. They really do see things clearly, while I'm sitting there wondering what the heck just happened to my well-understood diabetes. They say there's nothing to worry about. They say this is just pregnancy and type 1 diabetes! (Er...fun?) They say women are always surprised and overwhelmed at how fast things change, how often adjustments need to be made. I'll second that!
But I'm also freaking out with joy. Each week, my belly gets a little bit bigger. Each week, MAC and I just giggle at the idea of finally being the parents we've dreamt of being for so long. It's a fine line between accepting the situation for what it is and being willing to keep working on it. Because it's so worth it, I'm more than willing to walk the tightrope.

Wednesday, August 25, 2010

Backblogging week 13: new CGM and why people should think before they speak~

Or at least they could start by asking questions. :)

So we made it to our 13th week, Littlebird. Actually, I'm in my 14th week as I type this, so we're really, really starting to move along now, aren't we?! Soooooo excited to meet you!!!! Truly, you are the best gift in my life (besides MAC, your dad.) :)

So anyway, back to what I was er, complaining about. So I'm finally starting to tell people, and gals weren't kidding when they said that people absolutely love to give unsolicited advice. I don't even know if I'd call it advice. Sometimes it just feels like commentary. Everything from diabetes-related (no, you actually don't know what the hell you're talking about, random person) to breastfeeding and diapering. I have thought about all of this for a very long time, thank you very much. I know where to get my questions answered and certainly have no intention of listening to snobby know-it-alls. You'd think people might give a gal at least a little bit of credit. We planned this baby so carefully, took care of my type 1 so carefully, had so many conversations with each other and mentors and those we love...it's not like we have no clue what's going on here, people! Yeesh! Sorry, I just had to get this off my chest. Better now than later, eh? Of course, it's never going to stop. People even do this when your kids are grown! ;)
On the diabetes front, I got my CGM! (You can see it poking a bit into the pic there.) Whew! It's really interesting. It is a lot to deal with, I won't lie. Yet one.more.thing plugged into me. But I'm so very grateful I'm on the Revel now and the CGM transmitter just sends the data to the pump and another menu opens to use the CGMing aspect. I just hate the site. It's really gawky and feels large...but I'm getting used to it. The tegaderm is pretty itchy. But I'll talk about what happened when I didn't wear the tegaderm in my next post. :)
The whole trending aspect takes a little getting used to. Part of it is I've been on it only a few days and am still titrating my numbers to more closely match my fingersticks, but also just learning not to jump the gun and mess with it too much. I know people who freak out about their diabetes way too much...it literally creates a vicious cycle of freaking out about your numbers, only to make them worse, then you freak out some more and surprise! they only get worse. So, like the CGM trainer said, you don't want to just keep staring at the screen all the time. Sometimes we just need to calm the hell down with this disease, do our best and go take a walk. I refuse to let this disease ever own me.
Case in point: we went to the in-laws for my mother-in-law's birthday this past weekend. I always get a little nervous at parties. Because, let's be honest: parties center around food. Good food. Carby food. Untimed, munchy, grazy food. Now, I must say my in-laws are just fabulous about my diabetes. They always let me know what we're eating, when we're eating and if they added a little sugar to a recipe I would've otherwise assumed had none (read: 3-bean salad). My sister-in-law is so cute too, and even makes whole-grain pasta instead of white when she makes this awesome pasta salad with things like black olives, artichokes, sauteed mushrooms and some wonderful dressing she concocts. Yum.
So I was in charge of making the cake (I know, I know: ironic and hysterical). I made a vanilla layer cake with strawberries and whipped cream...kinda looked like this (only I sweeten my baking with agave nectar). Nevermind my dog ate half of each layer cake the morning of the party, forcing me to bake two more [insert wildly hysterical laughter here]. The point is, it all worked out and everyone liked everyone's food. The bigger point is that my blood sugars are always excellent when I just let myself have fun in food-heavy social situations. Instead of stressing about the food, I just do my best...often finding that it's enough. I honestly don't know what it is, but it works like a charm every time. Good times, good sugars. Who knows why, but I think it has to do with something called relaxing and having a good time. ;)
I really want this pregnancy to work out. I want this baby to be so happy and healthy, not under the influence of uncontrolled diabetes and emotional stress surrounding it for the next 6 months. So it's been great so far to see all of my diabetes-related work...work out, and my trying to just let things go whenever I'm worried...about this disease or not. Ya, sometimes I'm still bummed about the how-the-heck-did-I-get-type-1 question, but most of the time, I'm really amazed at how interesting and different my life has become, what I've learned, what makes me laugh, what gets me excited now. And right now, let me tell you, this baby is pretty darn exciting.

Friday, August 20, 2010

Backblogging week 12: the lows got the last word~

August 13th, 2010

(Look at that baby pooch!) !!!!!!!

This week, whew! I spoke too soon back there in a previous post about "what is everyone talking about with the lows?!"
To eat everything under the sun and still wake up with blood sugars of 50 at 2am and then again at 7 am...yeesh!! What the heck?! Kinda scaweeeey.
My CDE has to keep turning my night basals down. Oh, and she turned my afternoon basals down, too. She also increased my insulin to carb ratio and insulin sensitivity factor. To think all of this is gonna change to accommodate for greater resistance in a few months is mind-boggling to me. Because frankly right now, I'm amazed at the amount of food I can ingest without insulin. Sometimes it literally freaks me out. It's like, ohmygoshijustgotcureishouldremainperpetuallyinthefirsttrimesterinordertokeepdoingthis.
Uh, not.
So on the appointment front this week:
I had my 2nd ultrasound (yes, I know, it's nuts I have to do them so early.) But I did get to check out small fry from the 4-D approach this time. Wow, so weird to see his/her little face! Because I love to laugh, I started laughing of course (with tears in my eyes) and the tech was like, "um, well now. Can't get a really good picture here with all that jiggling around..." But it was so darn exciting! They did the nuchal measurement, which is an indicator for Down's syndrome. So far, baby looks ok. They also looked to see if all of Littlebird's limbs were intact (so far, so good, oh and uh, no wings) and the heartbeat (nice and strong at 160).
On the lab front:
My last A1c came back at 5.8% (I promise that's not me bragging, imagine chasing all those lows!) and all of my other blood tests like Total Protein and 24 hour protein came back fine. I also opted to do the first phase of contingency screening; which is solely blood-based genetic screening for Down's and another chromosomal defect. You can go on for amniotic fluid testing if the blood tests come back iffy, but this increases your risk for miscarriage and is only done (well, it's not required) if you're really high risk (ie, over 40) and worried. I get my results next week. Hopefully, being only 29-going-on-30, my risk is low. But *phew* always a little scary. So far, things have been turning out ok.
As you can see, my wee belly is starting to truly have a tiny bulge. I can't tell you how excited I am to finally *see* this. For me, a skinny gal all my life, gaining a belly---albeit one that makes me temporarily look like I drank too much beer (I kid, I kid)---is pretty darn exciting.
Next week:
I get my CGM (because I'm using the Medtronic Revel now instead of the Ping) next week. Thank god. Because if I'm chasing lows right now, I can't imagine the heinous stress of chasing highs in a couple of months. Wow, I'd be a total.nervous.wreck. Actually, without a CGM at this point, let's make that a capitalized Total Nervous Wreck.
I'll also begin to go through my clothes to decide which ones can fit over this strangely shaped bulge: too small for maternity wear, too big for what I own. Oy! A very interesting situation indeed, and one I am determined not be solved by running gear---as tempting as that is right now, haha. :)

Thursday, August 19, 2010

Backblogging week 11: new pumps and yucky bugs~

August 7th, 2010

Well, well, well. Week 11 was certainly exciting. No, I'm not being sarcastic---what ever made you think I'm like that?! :)

I'm finally getting a real baby pooch. Kinda kangaroo like. It's funny how you expand from the base, up. When you think of pregnancy, you think of how gosh darn big those bellies get and forget they don't just happen! It's been fascinating to me, being a science nerd and all, to watch this process happening in my normally wee body. Wow! I'm pregnant!!!
Ok, enough of that blubby-blub, sorry. :)

As I said very early on, my pregnancy CDE and Perinatologist wanted me to switch to the Medtronic Revel system for comfort's sake (combined CGM and pump, but still two sites...so don't get too excited. It's not an artificial pancreas.) So while there's two sites, it's certainly more comfortable than I would've been had I had to wear both pump and CGM devices. (Hi, my name is Emily! I'm just your regular robotic pregnant diabetic!)
Having said that, I had my pump training on my new Revel. I need to post a pic of my new pump. I got the purple one. I must say, it's pretty hip.
The pump training was pretty easy for me considering I was already on a pump (the Animas Ping). They all do the same things (thank god) and so the verbage and screen scrolling is just a little different. I.e, "insulin on board" on the Ping is "active insulin" on the Medtronic. As I get to know things about this pump, there are definitely pros and cons. I'll do a post on that after this. However, they're both excellent pumps and I don't think you can go too wrong with either one. I may like this one a tiny bit more, though. Except for the fact that it's not water proof like the Ping, which bothers me a lot for some reason. Maybe because a pump is like an extra appendage when you have type 1, and if it can't get wet it's kinda like being told you can't stick your foot in the water. Then again, wearing a pump might make my bathing suit fall down. :)
Towards the end of the week I contracted some very strange 48 hour bug. OH MY GOD. It was so awful. I am not a sickly person. The last time I got sick was when I got diagnosed with type 1 in 2008. So when I got this awful headache Tuesday that blew up into a combined headache with tummy cramps and well, you know, I was not a happy bird. I'm just glad I wasn't vomiting. So I was forced to just lay still. Everytime I tried to move around the house I was met with more stomach cramping. YUCK. So I just ate chicken noodle soup and drank raspberry leaf tea. This helped a lot and I was able to kick whatever yucky bug made its way into my body by Sunday.
*Raspberry Leaf is so wonderful!!
Here's why:
It's an herb that is useful in treating diarrhea as it is very astringent. It tones the digestive tract, essentially cleaning it up. It is also the premiere pregnancy herb, tonifying and strengthening the uterus for the course of the pregnancy, labor and birth.
*You just buy the loose-leaf tea preferably from an ethically-wildcrafted herbalist like Mountain Rose Herbs and put about 2 Tbs into boiling hot water, steeping for a few minutes. I like using a tea-straw to drink my loose-leaf teas, but you can also use a tea-ball. You can drink this wonderfully-easy-tasting tea all throughout the day when you have a bout of diarrhea or stomach problems, and at least twice a day when you're pregnant.

Well, we've made it through week 11, Littlebird. I hope you're doing ok in there. We have our 2nd ultrasound next week. Let's hope we get good news about your heartbeat and growth.

Wednesday, August 18, 2010

Backblogging week 10: chocolate pudding and the lows~

July 29th, 2010

As you can see, still not much of a bulgy bulge. Just an Emily-did-you-gain-a-few-pounds?-look. In fact, because week 9's photo is more close-up, I'm wondering now if this photo's more accurate in that it shows...absolutely nothing. Ha! But this bird still finds that little bulge quite exciting. :)
The lows have been really, really (did I mention really?) fun this week. Wow, amazing. Gals weren't kidding when they said it sometimes seems like you've got a bit of mini-D-cure going on in the first trimester just because of all the damn lows.
But they're not fun. oh no, they are not.
At times this week it was like I could eat things I could never eat (pasta! bagels! potato chips [all organic mind you :)] and I still could barely keep my blood sugar up. Constantly chasing. Because I've only had type 1 for a couple of years, I think my hypoglycemic awareness is still good and I really, really (wow, really is really my go-to word for this particular post, eh?) try to catch lows around 70 to keep myself sensitive. However...[voice trails off] that has not been so easy lately. Gosh, one day this week it was like, ew, I feel a little bit odd and BAM! 34 on my meter. Just like that. No warning. No reason. And I don't know about you, but when I'm that low, I just feel sick. Drinking juice is not refreshing, but actually gross. But a girl's gotta do what a girl's gotta do.
Then, I had the joy of doing a 24-hour urine test. This checks for protein spilling into your urine (protein in your urine is a sign that your kidneys are not functioning properly). Well, trying to pick a day where you're going to be at home more than out was hard enough, but just the whole, oh wait, the jug! it's in the fridge! next to the...orange juice! experience was beyond laughable. That night, I of course had to pee twice. Thank god I remembered to put the little pee-catcher-thingy on the seat. Then you have to take it into the lab right away the next day, where you feel like they're inspecting it for drugs or something as they take it from you. Let's just say the whole process is a bit degrading. Hi! I'm uh, here to drop off my...pee.
The only comfort this week was in making chocolate pudding. Super tasty. Didn't save me from the lows, but homemade chocolate pudding certainly saves the day. Hell, it saved my week. With a dollop of homemade whipped cream, it was the well, cream on top.

Tuesday, August 17, 2010

Backblogging week 9: the waves of nausea are so fun!

23 July 2010:

This week I finally met my new friend named Nausea.
Before, I was fine.
Then, I was just queasy.
Now, pure nausea. pure.
The worst part (haha, I know, laugh) is that sometimes I wish I'd just get it over with and barf.
But no, oh no. Not me. I get the joys of that awful feeling in your stomach all.day.long. FUN!
So MAC and I thought we'd use the "polarize it" app on the iPhone for our weekly pics. I haven't taken any before this because well, as you can see, there's [still] not much to see. I kinda just look bloated, if you ask me. ;)
But do you see that teeny-tiny pooch sticking out right above my pantline? Ya, that wasn't there before. I've been the same weight since forever...give or take a couple pounds. So let me tell you: this is so darn exciting to see a little pooch of ANY kind on me!
This week according to babycenter.org we have organs kicking into full gear and an almost-complete heart (good job, baby!) I'm also ecstatic to read about tiny eyeballs and earlobes being near-completion. Because as everyone knows, I like to talk. So of course I can't wait to talk to my little one!
As for diabetes. The lows are getting a bit crazy. And yet, I'm struggling to keep my numbers in control after breakfast. The CDE said that it's the pregnancy hormones causing the more difficult-to-control highs after breakfast. I'm now eating hard boiled eggs and corn for breakfast (don't ask: next up, the post on cravings!) :) This combination seems to be working for me right now, though: animal protein seems key along with a more whole-food based carb. Even spelt toast with peanut butter (my go to for the longest time after my diagnosis in 2008) no longer works. That's ok, the idea of peanut butter right now makes me wanna puke. So let's please stop talking about it. ;)
Exciting news though! My CDE and perinatologist really wanted me to be able to use the CGM. Because I'm on the Animas Ping pump, I would've had to get either the Dexcom (which was not covered, but is partnered with Animas) and is a completely separate device worn, or the Medtronic pump's CGM. Wearing a pump, a CGM and its monitor, and then the two sites would've been really fun you can imagine:
Random person I am sure to meet: Hey, look over there! It's a pregnant robot!
Me: Back off, bub! Anything for a healthy baby!
But really, it would not have been a fun experience to be 8 months pregnant wearing all of those....electronics.
However, Medtronic's latest pump is an integrated system called the Revel: yes, you still have to wear the CGM sensor and your regular insertion site, but the sensor on the CGM sends the BG data to the pump!! So I only have to wear one device! I just got approved to switch to the Medtronic Revel system and will go on the pump (I got the purple one! It's so cute! Yes, I'm weirdly excited about the color of my pump technology!) the first week of August. I'll start integrating the CGM in a couple of weeks after that. Kind of annoying since I'll already be in my 2nd trimester, but hey, better late than never. And honestly, as the numbers become harder to control in the highs department, I think I'll be more worried about catching that. My hypoglycemic awareness is still quite good (only having type 1 for about 2 years). It's still freaky though! I check my blood sugar about 12 times a day just to stay on top of everything, high or low.
So far, so good! My last a1C was 5.8% (mostly due to lows, let's be honest) while my others were more steady at 6% when I was planning the pregnancy and when we finally got pregnant.
I can't wait to post these posts! I wish I could, but I'm still so nervous about being in the 1st trimester and all its vulnerability. *Yikes* I just keep focusing on the positive and my deep gratitude just for the entire experience so far...oh my god, I'm a mama!

Monday, August 16, 2010

"Backblogging" week 8: the truth is...!

July 15th, 2010

Well, I'm 8 weeks pregnant.
I can't tell you how utterly excited and crazed with joy I am!
But, in classic fear of getting too sentimental and attached, I'm not announcing the pregnancy until I know it's safely after the first trimester.
I've wanted to write draft posts since I found out (at about 5 weeks) but to be honest, it all felt so strange and unreal still. It was like, noooooooo this isn't really finally happening! After all that planning and working and planning and working for the past year with Endocrinologists, meeting with OBs, talking with Maternal-Fetal Specialists and Diabetes Educators---we now have a baby on the way. And I hope it stays that way. ;)

It's all exciting, but funny sometimes too, because I haven't felt that wonderful. Oh, it's not like I've been vomiting all day long. Just the generalized queasiness. Ugh. It's awful. It's like that nauseated feeling you have after getting over the flu: you want to eat, but are kinda afraid...you feel just a bit too sensitive still to be sure. Oy. Sometimes it's made better by eating, and other times I just want to run and hide from the looming refrigerator begging me to make dinner for MAC (my honey) and I.
I also found this fun website that tracks your pregnancy (after you've entered your dates to get the due date). It sends you an email each week to read about how baby's growing. So fun! I'd like to start taking belly shots because that'll be just way.too.fun. :)

I haven't been struggling with too many lows, as most women have told me I would...gosh, everyone had me so worked up about getting a CGM for fear of dying. Well, but I can't say it's been easy. My BG's only stable if I eat just so but I haven't had hypoglycemic unawareness. You have to remember though, I've only had type 1 since 2008. I am hoping to get a CGM though. We did a 5 day "silent" reading (I didn't wear the actual device, only the sensor) through my hospital last week (in order to get a long term one approved) and guess what? the stupid sensor failed. 5 hours into it. Ya, I was pretty flippin' mad. I wore that darn thing for 5 days and it wasn't even working 5 hours into it. nice. So we're doing a second trial this week. I'll post about the results.
One frustrating but interesting tidbit is that I was switched to Humalog from Novolog right when I found out I was pregnant because a couple of studies showed it to be ever so slightly safer for pregnant women, as far as fetal development goes. Unfortunately, it threw my sugars so way off I had to switch back. Thank goodness I've met plenty of type 1's who used Novolog with perfectly healthy baby results, or I would've been having a cow (well, no, I'm not having a cow in 9 months!) about what to do. Maybe I spoke too soon about not having lows. I struggled so much to keep my BG in check that terrible week I was on Hellish Humalog, maybe now the "regular" pattern many women report of lows in the first trimester will begin to happen. Let's try and not jinx me here. :)
No specific cravings, although I am completely and utterly grossed out at the idea of a cup of coffee right now, which I used to covet every morning. I literally start gagging at the thought. Oh, and there was one evening MAC watched me work through an entire jar of pickles. So I guess I lied. ;) I was reading in Aviva Romm's fabulous book "The Natural Pregnancy Book" that the craving for vinegary foods "encourages our bodies to release calcium into the bloodstream" (a good thing for a growing baby who needs strong bones!) She tells us that usually when you "improve [your] intake of protein and calcium, no more cravings [for vinegary foods] happen." So interesting!
So this is where I'm at. So far so good. I'm saving these until-after-the-1st-trimester-posts as drafts because of the risk of miscarriage. But I'm feeling blessed and healthy so let's hope this baby---we'll call him/her Littlebird--- can stick around for an extended visit. ;)

Wednesday, August 11, 2010

the intimacy of food, part 2~

Wow, I seem to have a pasta theme going on lately with this whole "sometimes I just wish I could eat" topic.

The reason this blog post is broken into two is because the first time around I was just thinking about the most essential ingredient to type 1 frustration: the desire to just eat. Like normal again. To just, you know, get on with it.
But the second part involves something so much more external. It's hard enough having a somewhat, shall we say, strained relationship with food. But what can be even harder is when other people get involved.
Oh, you type 1's all know what I'm talking about:
the good old Diabetes Police.
When I'm in a situation with what we folks from Pittsburgh call "nebby" (aka, "nosy") people, I sometimes feel strangely obligated to eat something overly healthy. Or, to not join in on the shared lava cake for dessert. Now, with understanding people and close friends, I don't feel that way. But every once in a while, when I'm at a party, some loud mouth's gotta say, "Emily, get your hand out of the cookie jar." No joke.
But what can be more difficult is when you have to go to the Endo or the CDE---as nice as mine are, they're only human---and sometimes when they're looking through my logs and spy a day I had a real problem meal, comments like, "My god, what did you eat?!" can come flying.
Ouch. There has got to be a different way to say that, Doc.
What makes this hard is that in the first place, I have to talk about my food. Talk about feeling like you have an "eating disorder." That we have to even do this; show "food logs". So.Darn.Weird. But don't get me wrong, I willingly hand over my logs and am anxious to learn and perfect this sometimes extremely unkind disease. So all in all, things work out. But every once in a while, when I'm hit with the comment, "What happened here?!" there is a rush of guilt.
No, anger.
No, embarrassment.
No, shame. That's it. Like I have the ability to control every outcome of this disease. Like I should be able to predict and determine every meal's perfect 100 ending. Sometimes, diabetes really is like being in the flippin' Olympics. You try ice-skating while serving drinks to the judges and audience, then land a triple axle on one foot.
The bottom line is that again, the intimate relationship we should be able to have with our food as human beings---as snackers, munchers, decadent chefs, sense-blowing souffle indulgers, is not so easy with diabetes. It can be so hard to eat certain meals when you're thinking, "if this goes wrong, my CDE might say, what on earth did you eat?!"
A lot of this might still be due to the fact that I've only had type 1 for a little over 2 years. I'm still learning about certain foods....even the healthy ones, like beans. Beans can be tricky for me (all that fiber combined also as a carb and a protein). However, I wouldn't trade the discussions I have with my CDE and my Endo. I learn so much from pouring over my logs together. And, as my very first Endo said (and I still really believe this is what defines a good Endo; one that is gentle and does not judge):

You own this disease and understand it in a way I never will.
My job's just to help you see the forest from the trees.

Monday, August 2, 2010

the intimacy of food, part 1~

Sometimes I just wanna eat.
I don't want to think about it. I don't want to count carbs. I don't want to worry about if I should or shouldn't be eating a certain thing.
Sometimes I look around and I see all of these gross people mindlessly stuffing themselves full of french fries and pasta and cake and triple mochaccinos with an extra shot of "carb" and I just wanna be them.
Of course, I'd be sick to my stomach at the end of a day of eating like that, but still. You get my point.
Heck, it's even just the wanting to eat some soup and salad for lunch and hoping the bolus goes ok (too much? too little? too EVERYTHING?)
Now, I know that doctors and diabetes educators tell us we can *technically* eat whatever we want (especially someone like me, who tends to be underweight) but we all know that's not a healthy way to live. And honestly, I like eating healthy. But sometimes I just want some damn french fries. And why do I not eat french fries, you ask?

1) They are a carb count I will never figure out. What is 15 grams of french fry? Do you count them, one by one? Do you just grab a handful?
2) They require a combo bolus (dual wave, to medtronic users) that I simply can't get right. I already have a hard time with this type of bolus, but I really don't wanna mess my cards up doing it on flippin' french fries. Let's just say hours of painful work ensue.
3) I actually don't like french fries that much (honestly). But man, when I want some....
*Please insert the word "pasta" into the above numerical discussion. Now you see why there are just certain foods that make me wanna cry. Especially because I technically *can* grab a handful of french fries in an attempt to measure them, but with pasta? C'mon on. That's just not a dining experience you'd want to share with anybody.

What I'm talking about here is intimacy. With food. My food. But it becomes more than just "my food". Sometimes it feels like it really isn't my food. I look around at a picnic or a restaurant or a dinner party sometimes and it seems like everybody's got their own food but me. Like me and food need to go outside and have a little chat; make an agreement: now you be nice this time. I told you about how what you did last time was so.not.cool
There is so much that goes into eating a meal when you're a type 1 diabetic that you simply cannot plan for...the pre-meal number. The type of food. What you're doing after you eat. The random person who comes up to you to say hi right as you are calculating a bolus, causing you to forget you wanted to do a combo bolus instead of a straight shot. Oops. Life happens.
It takes away the ability to savor your food sometimes. Don't get me wrong, I also think type 1 diabetics are some of the most savor-your-food type people on the planet. But there's always a twinge of anxiety as you check that post-meal number, hoping the calculations and planning and timing and...conversations all.went.right.
So sometimes I just wish I really owned it. Food, I mean. Like we had this intimate relationship. An understanding...the way it should be when your immune system isn't busy attacking your pancreas (what the heck are you doing down there! Get back to your real job, ya lazy...SYSTEM!) Then, you just eat. Mindlessly sometimes. But in my [mostly] healthy world of living and eating, mindlessly simply means I'm focusing on the conversation with my honey. Or my friend. Or my book. Or whatever got stuck in my tooth.

Saturday, July 17, 2010

Airheads (but uh, not the candy)

first off, let me start with a disclaimer:
I am the world's most patient person.
No, really. That is not me being arrogant or bragging.
It's true. To the point of being a fault.
I don't make fun of people, I'm extremely patient (emphasis on extreme [this should explain its faultiness]), and I smile kindly at the most annoying and rude of people. Unless they're being rude to someone who can't help themselves...like the refugees I work with. Then I become like a lioness and will tear you to shreds. That, or like the time I saw some very mean children kicking a pigeon around that somehow had become disoriented and forgot it could, um, fly away. Either way, it was cruel and I rushed up and had some choice philosophical words for those kiddos. Then, I was not kind or patient. Just...honest. :)
*Phew*! What a tangent!
AnyHOO, I wanted to start with that lovely disclaimer because I don't want you to be put off by the title of this post (or the on-coming post, herein) and think me some kind of judgmental, intellectual snob. We all have our moments (as described in my above pigeon story) where we just can't take it. You know what I'm talking about. Ok, so I think I just lied, then. I am certainly not the world's most patient person if I have my moments where I just can't take it anymore. ;)
So tonight, being part of imperialist-consumer America, I wanted to go to the Body Shop in the mall (when do I ever go to damn mall?!) to look at their sale and buy some yummies for the upcoming mother in-law's birthday. She and I have this thing about really great creams and body butters now....so we're always on the look out for each other, haha. (Yes, I actually get along swimmingly swell with my in-laws....)
While we're at the mall, I just had to look in some of the shoe shops, because I do love shoes. When we went in, this girl, ohhhhhhh, this shop girl. Total antithesis of Steve Martin's brilliant character in his novella Shop Girl (yes, Steve Martin the comedian-actor is more than "just an actor": he majored in philosophy and writes real books, too). Wow, I am very tangential tonight! Note to self: never night-blog.
So this so-not-like-Steve-Martin's-Shop-Girl shop girl literally swoops down and clings on and won't let go. She likes the shoes I'm wearing. Thank you, shop girl. She wants to know my shoe size. 7 1/2. She sees I'm looking at Rocket Dogs and states that they are the most comfortable brand. Yes, I know this shop girl. That's why I'm wearing some and also looking at this lovely ballet flat. *Ahem* No, I don't actually think like that. ;)
But then, oh then. Shop Girl spies my insulin pump. Yes, it's green (Animas Ping!) So I can't complain, because I'm pretty loud and proud about Public Education in the World of Non-Diabetic Diabetes Education. But this girl. She began to come close to it. She's staring at it. Gabbing about it. Going on and on in this annoying giggling manner in which I could not get a word in edgewise to um, clarify a few things about the "cool Mp3 player" I seem to be wearing and oh-where-can-she-get-one.
"It's an insulin pump."
"A whaaaa?"
"An insulin pump. I have type 1 diabetes."
"OH! OH, oh oh! I just thought it looked so cool! Like, I love the color and thought it played music or was a cell phone or something. I just thought, like, where can I get one?! OH MY GOD, I had no idea! It just looks so
[get this]....normal."
"Well, I don't think you'd want to have to wear one of these 'Mp3 players'!"
She just flushed. Very red.
But that word normal. So problematic, eh? I am normal. I am healthy. I am happy. I'm just like everybody else and yet still very much unique me: we are all shattered and yet still whole (as Ron Rolheiser, a spiritual writer tells us.) You can't escape it, and yet can find so much comfort in it if you just embrace it as a fact of this beautiful, boombastically blessed life. We get so caught up in feeling awkward about ourselves no matter what's going "wrong" with our bodies that we forget that everyone's got something going on. Some people are just very good at hiding it or acting like nothing painful or difficult has ever happened to them. Difficulty and struggle are not always physical.
So why not use it as an opportunity to learn, to understand? Why always freak out and just start laughing and backing off? Why do we do that so much in the U.S? Is it just me thinking it's only an American thing?
I must give Shop Girl credit, though. She wasn't making fun of me. It was just the way she suddenly shut down and began hysterically laughing to deal with her own sense of..embarrassment? As if my disease and the need to wear an insulin pump was some private matter and she'd crossed the line with me. Yes, granted, some people I know are more private about their type 1. I completely respect that. And I have days and moments in my life, too, where I just don't wanna talk about it with you. Please just let me eat my food without you asking me a million questions. But most days I am open. Most days I'm happy to answer any and all questions people have because frankly, I know it confuses and [somewhat] fascinates people. When they meet someone who is open, they sometimes latch on viewing it as an opportunity to ask all of those questions they never felt they could ask more private people (Seriously, you shoulda heard my acupuncturist the first time she found out I had type 1! "Ohhh, can I see the site? How does this little machine work? How do you take it for a meal?" On and on. And on.)

I guess all I'm trying to say is that (and I think I'm quoting some other way more awesome members of the online type 1 diabetes blogging community here):
This is the new normal.
And I take no shame in that. It's not about showing off, either. It's just that this is my life now and I accept it. I live it to the fullest and have never, ever, ever stopped dreaming or loving life no matter what has come my way. I look forward to each and every day I am given, and find innovative ways to continue to do all of the things I did before I got type 1 at the age of 27. Each day is new and exciting and difficult and awful and ping-pongy and sweet and wonderfully BIG.
Even the days my green pump so does not match my outfit. :)

Wednesday, July 7, 2010

denise faustman's making headway~

I just had to post this because while I'm sure it appears that I'm on some "cure diabetes" kick lately [see last post] I promise I'm not. Well, who isn't that has type 1...but that's beside my point.
I just have a tremendous amount of respect for Dr. Faustman. I feel that she is honest, ethical, and not a brown-noser or a business woman. She (at least it seems to many of us in the Type 1 community) is concerned for the science behind autoimmunity; truly wants to understand it's mechanisms. That is why it is so incredible that she is using the time-tested BCG vaccine---we already knew it would pass the Phase 1 portion of the trial. It's amazing though, in this world of Big Pharma always winning, that no one stopped her. And no one did. Oh, they tried. They even tried to do bad science---set up experiments solely for the purpose of proving her own results wrong (when she regenerated beta cells back in 2008). In good science, you work by process of elimination essentially---you don't go about conducting experiments for the sole purpose to "prove" or "disprove". Funny thing is, when the angry scientists against her propositions and results revealed their own, they only found that she was right. Denise Faustman regenerated beta cell function in longterm diabetic mice by using the BCG vaccine. Now she's trying to replicate those results in humans.
The Phase 2 portion of her trial will attempt to do just that.
What so many of us love about her is how unassuming and un-arrogant she is. She blatantly says it might not work. She says it even might only give us a window to prevent hypoglycemia. But as Bernard Farrell said over at his blog a couple of years ago when he had the opportunity to interview Faustman: "Hey, I'd even take never having a low again!" Who wouldn't agree? The point is, she's onto something utilizing the immunological pathways to better understand our disease. This may not be about a cure, but just like pump and CGM therapies have changed the way we approach this disease, so will studying the how's and why's of the immune system's decision-making process to destroy our blessed little beta cells.
I won't be holding my breath, but I just had to post this to say that I'm proud of her. I'm so, so happy for Dr. Faustman because she's never let anyone who put down her work get to her. I really do believe she's in her field of work for the heart of the matter: to better understand what went wrong with our bodies---and how to make it (even a little bit) better quality of life. And yes, deep down we all hope and pray: maybe even a cure.

Monday, May 24, 2010

if there was a cure~

I was reading a lot of other way more awesome type 1 blogger's posts a week or so ago and there seemed to be going around a wonderful little topic of "what would you do if there was a cure?" for everybody to post about. The funny thing I noticed was a lot of folks had pretty short posts; which I can relate to. There's so much and so little to say. There's so much heartache and hope. There's so much "oh, we've heard this one before, why even ask?" There's been so much disappointment and despair that I tend to be of the school of thought that you just can't live your type 1 life waiting around for a cure.
However, that being said, we've all had moments where we wonder. Some of us like myself, got diagnosed later in life (me at 27) so I have a lot of reality checks where I'm reminded of how much more planning goes into a backpacking trip than before, let alone a simple dinner party at a friend's. And these are moments where I have that fleeting thought of "god, this is just never gonna be 100% second nature for me, is it?"

But then, what would I do if they told me I could stop?

That all of this: $7500 pump on my hip, the tubing, the sites, the isopropyl alcohol, the adhesive remover, the test strips, the cartridges, the back-up needles, the extra q-tips, the juice boxes in every bag, the neosporin, the butter compartment that never holds butter.....could all just go away.

I'd say holy shit you're lying and I'm not giving back this damn glucose meter,
that's what I'd say.

I'd hold onto it all for so long. I'd hold my breath. I'd check my blood sugar as often as I do now: about 8-10 times a day. I'd eat salad and small pieces of toast in fear of my body rejecting whatever "cure" it was that made my immune system stop attacking my pancreas. I'd laugh at every good number maintaining only double digits. I'd cry myself to sleep a few nights in fear of dying in the middle of the night. I'd wait for the symptoms to start all over again: thirst, peeing, hunger, leg cramps, blurry vision. I'd wait in fear of losing 10% of my already tiny body weight again.
But none of that would come back. Not with a cure, right?
Not with a cure.

But then, you know what?
I'd have a dinner party like the ones we always do. Only this time we'd have a big bowl of spaghetti. For dessert we'd have chocolate cake. I'd even put cherries on it. And then we'd dance and dance to the always hopeful and melancholic Billie Holiday until we became the stars in the nightsky themselves. Because we did become them; oh, but we always were.

Oh, I wouldn't overdo it, no. Not with everything I've learned about food and living healthy just from having this disease. I'd not take it for granted. But I'd celebrate, oh god would I celebrate! I'd not just celebrate the cure. I'd celebrate a life well-lived in the face of something so often so unforgiving, something that often laughed in our faces and we had to learn to laugh back, something so distant and bizarre and yet always so damn close. We could never get away. I'd celebrate the enemy-disease turned friend-who-taught-me-so-much.
I'd live the biggest, loudest thank you for the rest of my life.

Tuesday, April 13, 2010

I really hate it when the diabetes police show up...

So I'm out somewhere and someone who knows I have type 1 takes it upon themselves to be the diabetes police.
love it.
Today at work, this gal brought some treat bars for the presentation we were giving. I work with refugees part of my week, so it really was a treat for them.
So she opens the container up and basically waves it in my face saying, "I made these for the folks today and they're just so decadent, I know you can't have them."
Not like I asked for one.
So I just look at her and say, "I have type 1. I can technically eat anything but I choose to eat as healthy as I can, as most people should."
"But wouldn't this just like, make your sugar go crazy?"
"Yes, treats should be eaten in moderation---as it should be for everyone. I don't make insulin. If I ate salad for the rest of my life I'd still die if I didn't get insulin."
"Well, I don't know if there'll be enough...."
[Me, thinking: what.the.eff.]

I'm learning not to become uncomfortable with people's silences in general after they do something like that to me. And not just with diabetes. With how some people treat people in general: as a know-it-all. The more you explain yourself, the more you fight back, the worse they get.
And I've learned not to usually engage in such "diabetes-policing" conversations. You just have to let it go. If they're like that to you, they're probably like that about everything with everybody. You are just an easy-target because what you deal with everyday is so....mundane: food. It's like they're thinking, "what a great opportunity for me to illustrate my deep understanding of this grave matter."
Ya, right.
The best part though, I must say (and I don't usually celebrate people's downfalls) was when she handed them out to the refugees. These people come from all over the world, mind you. What they consider a "good dessert" is often very different from what Americans do. Our palates are trained to crave way-too-sweet things. I'm honestly at the point now that I don't even like things too sweet because I've re-trained my palate to a healthier state in that regard.
So she hands them out and everybody said,
"Ugh. Too sweet!"

I actually felt bad because I could tell she was really excited, and it really is awesome and kind of her to make food for these very poor people. But I had to laugh nonetheless...

Sunday, April 11, 2010

blessed by good health~

I was thinking today how blessed I am by good health.
You read that right.
No really, I know I've not had this beast for more than 2 years now so I'm sure I have an "easier" time while my residual beta cells party on for me, but my health so far has been a blessing. My diagnosis, while traumatic (like everyone's) was not like others': ending up in the ICU after puking all the food they ever ate out. Ok, you coulda done without that mental picture, I know. But some people really do end up so sick they have to stay in the hospital for a couple of weeks, some even go into a temporary coma, their brains so high on glucose. literally.
But me, well, I got terribly sick, but I also got to go home the next day. I view being 27 at the time as also being a blessing, that I could absorb and process what was being told to me not about me. I also have a health background, so there were very few times I was like, "layman's terms, please!!" Which is really not a good thing. All doctors should have enough respect for their patients to know to speak gently and with dignity at their patient's level of understanding.
I'm not exactly sure what this post is about. I sure hope I don't sound like I'm bragging. I guess I'm just trying to count my blessings. I didn't die. I adjusted to the diagnosis well; who knows why. I think I've just had my share of enough personal losses (that wasn't cynical, I promise) and am very good at adapting. But I also think it's a pride thing: this thing is not gonna kill me. Not today. Sure, when I get old, maybe some things'll happen. Maybe diabetes will be the thing that eventually catches up to me. But it can do that when I'm 80 or 90.
Right now I'm excited at how healthy I am. No, I really mean that. Sure, I've learned way more about food than I think is humanly necessary or normal, but it's also what saved me. Every day. We think about food way too much. But we are also these amazing encylopedias on fat, fiber, sugar, stress, socializing, exercise...you name it, a type 1's got the answer (or an idea of one, at least, haha!) We are certainly an opinionated group of folks. With reason!
I'm happy to be where I am today. I sometimes can't believe I'm saying that. But this disease has taught me so much about myself. It has taught me so much about life. About empathy. About listening. It has blessed me with a second chance at seeing life from a completely new angle---one we'd have lost the day the symptoms set in prior to 1921. I'm truly blessed by good health.

Tuesday, April 6, 2010

oh, what a vacation can do~

So I didn't post about how my trip actually went. I won't go into the gory details (haha) but let's just say it rocked.
The entire time we were there, I struggled very little to keep my BG in check. AMAZING. There I was, all worried about the slight time change, and then suddenly it hit me that I just need a permanent vacation, haha.
*Ok, wait. There was one night where I stupidly crawled into the tent without juice but after having a snack because I was at about 80 with some insulin still left on board....DUMB. Let me tell you. Woke up in a cold sweat, shaking. But then, I went outside to get that damn juice box I forgot and guess what? Stars. I got a personal viewing of the night sky in a way I hadn't seen in years from living in the city. Maybe my low was meant to be. Or maybe I'm just delirious. :)
No really, it's amazing what a little camping does. I knew it would do that, deep down. It's like a mini D-cure whenever I camp. I did have to keep up with the snacking on some of the hikes (then it hit me that I hadn't been turning my basals down by 50% like I always do for intense exercise....duh.) Chalked it up to not paying attention and having such a blast hiking with my old buddy Martin (rock awesome human being!) and the in-laws, and of course, meeting Matthew's supersweet Grandma. I love grandmothers. But I like people at any age, especially the ages most people hate: toddlers, teenageers, and the elderly.
Matthew's been gently (ok, kicking my ass) lately about reducing my stress levels. He knows I'm freaking out about getting this whole pump-crazy-on-the-female-cycle-let's-not-even-mention-food-and-pregnancy- thing. I've also been dealing with some personal family stress the last year that's not been pleasant. But he's right. All a person can do is calm down and work on what you can and hope for the best in the journey. I'm giving it my all. I'm doing good work in my life: assisting military folks, refugees, and of course, providing massage therapy (i love helping folks, can you tell?) Sometimes, it really is just about letting go of all that bad stuff: the worry, the doubt, the what-ifs, the momentary failures...and just begin again.
So today I offered myself that. After doing my daily yoga routine (really great for your back and hips, I tell you) I went about my normal work of helping the refugees out and some health-intakes for military members in distress. Sometimes, I think part of my elevated BGs are a result of the work I do: helping so many people with very serious, immediate problems. I internalize too much. This is why I think I'd be a horrible social worker. Sigh. Anyway, my point is: in my mind, I was still mulling over all of this carefully-planning-a-family-stuff. I was still harboring worry. But I just tried to breathe and relax and enjoy this little life of mine....and realize that sometimes it's time to shut the hell up! You know? I just went about my normal routine and really worked at letting myself move through it all. That doesn't mean I detached myself, I just really let myself move through my day like light passes through a window.
And my blood sugar was awesome! Of course, it helps when I stay with my healthy-eating patterns, but it's very nice either way, right? To be reminded that yes, each day is a new day; no, I'm not dying of diabetic complications, and most importantly: this is my life and dammit, I'm living it to the fullest I can no matter what.