Saturday, September 18, 2010

Invisible Illness

I saw this meme going around last year and never did it. It's a little unique and pays homage to the fact that it is National Invisible Chronic Illness Awareness Week. Mouthful, huh?

Invisible Illness Week is just about raising awareness for chronic illnesses that aren't outwardly apparent and creating a community of folks who "get it." Sounds like a good thing to me! As a diabetic, I look normal and (most of the time) I am normal. But, really, I'm not like everybody else. As a general rule, I like having control over who knows about my diabetes and what they know. But that doesn't mean that there aren't disadvantages to having a disease that no one can see.

I don't do meme's often but I think this one is interesting and asks questions that I either don't get asked often or that I have never even thought of the answer to. Enjoy!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Type 1 diabetes. Or juvenile diabetes. Or "the 'betes." Whichever you prefer.

2. I was diagnosed with it in the year: 1991.

3. But I had symptoms since: I don't remember really well, but I want to say that I only had symptoms for a couple of months before I was diagnosed.

4. The biggest adjustment I’ve had to make is: everything! Diabetes affects every single aspect of your life. I was diagnosed when I was 8 years old so I don't remember much about NOT being diabetic. (Still not sure if that's a blessing or a curse.) But interestingly enough I definitely remember all the education I was given and how my family life changed. We started to have to weigh food, count food exchanges (can you say old-school?), learn to give shots, use glucometers, and develop a whole new routine. It was definitely a huge adjustment, not just for me, but for my whole family too.

5. Most people assume: That all diabetes is the same. It's NOT!! Type 1 and Type 2 are so different! Look it up!

6. The hardest part about mornings are: that I have to PEE like a maniac!! But that usually has more to do with the little one I'm hosting than my diabetes. :-)

7. My favorite medical TV show is: Bones. Is that medical? Or just gory? Either way, great show.

8. A gadget I couldn’t live without is: my insulin pump? That's not really true because I really don't mind the old-fashioned injections. My blood sugar meter? Sure, I love being able to test and within 5 seconds have my blood sugars. But if I'm really being honest about what gadget I couldn't live without, it would have to be my DVR. ;-)

9. The hardest part about nights are: making sure that my blood sugar is just right before I go to sleep. I hate the idea that I could be heading up or down and not know it right as I'm going to bed. Because that's several hours of unmonitored blood sugars taking a toll on my baby and my body. But it's just so difficult to make sure you are hitting blood sugar nirvana right before you hit the sack.

10. Each day I take __ pills & vitamins. Right now I'm only taking prenatal vitamins (1 pill). But I have a feeling that's not what this question is driving at. As far as medications and care routines, I take insulin all day by using an insulin pump. I test my blood sugar 10-12 times a day and count carbohydrates to determine how much insulin to take.

11. Regarding alternative treatments I: don't believe that they are practical for diabetics. Sure, eating right and exercise are great for everyone and will certainly improve your health and diabetes control. However, there is (currently) no cure for my diabetes and there is nothing I can do to stop taking insulin. No charms, no extracts or vitamins, and no snake oil.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. Having a disease sucks any way you slice it but I suppose there are advantages to being able to control who knows what, when they know it and how much they know. (By the way, I don't really like the term "illness." It makes it sound like I'm sick and since I'm taking care of myself, I'm actually pretty healthy. I'll stick to "disease" if I have to call it anything.)

13. Regarding working and career: I don't really feel like my diabetes affects my work. I have a very demanding career and schedule but I think that I do as well with it as anyone else. Sure, there are times when I need to excuse myself to test or correct a low or high. But I really feel like someone with diabetes can do anything.

14. People would be surprised to know: that unlike most diabetics, I'm not a big fan of the CGM (continuous glucose monitor). As far as I'm concerned, they are uncomfortable, cumbersome, inaccurate and overall just a royal PITA.

15. The hardest thing to accept about my new reality has been: that it doesn't feel new. It feels like something I've had forever and probably will continue to have forever. And forever can seem like a long time when you know that diabetes will be with you the whole way. Especially when some days I just want a break! But it sure beats the alternative. . . .

16. Something I never thought I could do with my illness that I did was: nothing, really. I know a lot of people diagnosed around the time I was grew up scared and always aware of their limits but I remember the people around me always telling me that I could do anything anyone else could do as long as I took care of myself. The scariest thing for me was always what could happen if I didn't control my blood sugars. In nursing school, I saw plenty examples of what uncontrolled diabetes could do to a body after decades. That's enough motivation to keep me on track! And being in good control makes me feel empowered, it makes me feel like I am the one controlling the disease and not the other way around.

17. The commercials about my illness: have nothing to do with me. They are usually targeting Type 2 diabetics. Plus, they make the stuff I go through every day seem like this huge deal. I remember when meters came out that used way less blood and all the commercials talked about was how you could avoid "painful finger-pricks" and test using your arm instead. Well, having had diabetes for 15 years at that point, I was pretty used to the finger-pricks and the idea of my being scared of them or "relieved" that I could use my arm instead seemed a little ridiculous.

18. Something I really miss doing since I was diagnosed is: who knows? I can't even really remember not having diabetes. But I do remember about a year after I was diagnosed getting my first case of diabetes burnout. So I know that at some point I could remember a time in my life when diabetes wasn't clouding the picture and that it must have been a pretty sweet gig.

19. It was really hard to have to give up: my freedom. Sure, I can technically do whatever I want, but it sucks knowing that most things could be 1000x easier if I wasn't dragging this disease around with me. For example, trying on new clothes without having to wrangle a pump, eating Halloween candy without having to bust out a calculator and at the same time juggling my guilt, doing any kind of exercise without having to SWAG my basal rates into something that might keep me from going low, and traveling without having to pack a separate bag with back-up supplies (and back-ups for my back-ups) and then having to go through stupid airport security without my metal pancreas setting off any alarms. . . ya know, just to give a few examples!

20. A new hobby I have taken up since my diagnosis is: Well, I've had it almost my whole life (or at least the part I can remember) so I've picked up and dropped several hobbies over the years but that was mostly a function of growing up rather than having diabetes. But the one that stuck and was primarily related to diabetes is blogging!

21. If I could have one day of feeling normal again I would: eat whatever the hell I wanted (carbs be damned!) and not have to do the math in my head!!

22. My illness has taught me: that I am stronger and tougher than I ever thought I could be. . . and even on the days when I feel defeated I'm still probably tougher than most.

23. Want to know a secret? One thing people say that gets under my skin is: Just one thing? Here's a list of the most annoying things that the diabetes police come up with:
  • "Are you allowed to eat that?"
  • "My friend/co-worker/uncle/cousin had diabetes and lost an arm/died/didn't take care of themselves/went blind, etc."
  • "If you are on a pump, your diabetes must be really bad."
  • "Are you low?" or "Test your blood sugar!" (said by a friend/family member/::cough:: husband if I'm acting funny or even in a bad mood . . . which, by the way, I'm allowed to be without actually having an off blood sugar!)
  • "I don't know how you do that. I hate needles. I could never give myself a shot!"
  • "Aah! I hate needles/blood!" (said by someone nearby when I'm about to test my blood sugar or give myself a shot. Guess what? My syringes and I aren't exactly friends but I have to do this to live so, if you don't like it, pipe down and don't look!)
24. But I love it when people: ask me questions! And not just ask me questions but act like they believe me and are actually interested in learning something. So many people look at you like you're looney-tunes if you say that you can eat whatever you want as long as you count carbs and bolus. The media has hyped diabetes up to be this one-dimensional disease that when you try to tell people the truths and intricacies about it, so many continue to think they know more than you.

25. My favorite motto, scripture, quote that gets me through tough times is: I don't really have one. I use the DOC, my family, my friends and my husband to help me get through the tough stuff. I will say that knowing what a big difference my tight control has made (no complications, a healthy pregnancy thus far, etc) also helps me get through the tough days knowing that I'm just taking one more step toward a long, healthy, happy life.

26. When someone is diagnosed I’d like to tell them: that despite everything that you are taught there will be days when you do everything right and your blood sugars still don't behave. You will get mad (and if I'm honest, I believe you have a right to) but try to remember that it doesn't mean you failed, it just means diabetes sucks! (And I'd like to have someone remind me of this every now and then, too!)

27. Something that has surprised me about living with an illness is: that most days it doesn't really feel like I'm "living with an illness." It just feels like life.

28. The nicest thing someone did for me when I wasn’t feeling well was: take absolute and total care of me. When I was little, I remember my grandmother and grandfather taking care of me on days when I couldn't go to school. They held my hair while I barfed, let me sleep but woke me up when it was time to test my sugar again, tried to get me to eat something, stroked my hair as I laid my head on their laps, shared vigils with my mom in my hospital room so I would never be alone. And now, my husband is completely awesome when I don't feel well. From being an occasional gofer and grabbing my supplies, to drawing up the occasional injection, to looking up the carbs for me, he seems more than happy to help me carry this load.

29. I’m involved with Invisible Illness Week because: I have diabetes? And I'm too lazy to write a "real" post? Not sure what you're looking for here.

30. The fact that you read this list makes me feel: like maybe you will take the time to re-post this meme with your own answers!

Tuesday, September 14, 2010

Belly and Baby Update: 21 weeks

This week we went for a fetal Echocardiogram. It's basically an ultrasound of the baby's heart. They look at the structure and function of the heart and make sure that it's growing and developing like it should.

In IDM's (or medical speak for "infants of diabetic mothers"), there is an increased risk of congenital heart defects. This is definitely something I know a lot about from working in the NICU and have seen frequently. The most common congenital heart problem in IDMs isn't actually a defect but is congenital cardiomyopathy. It's where the muscles in the walls of the heart grow bigger than they should. And unlike most muscles, as the heart muscle gets bigger it stops functioning properly. Most IDMs grow out of this after birth and the biggest concern is that it doesn't cause the baby too many problems before he/she can grow out of it.

In a nutshell, this is what I've been most worried about during this pregnancy. Of course, I want her to grow appropriately (not get too big) prior to delivery and I want her blood sugars to be okay when she first comes out. But these issues are, for the most part, transient and won't create long-term issues in an infant. Congenital heart defects are horrible and don't let kids be kids. They require surgeries and ventilators and could in some cases be fatal. Even though IDMs have a greater risk of this happening to them, the overall risk is still pretty small, especially in mom's who are well-controlled. But, as a parent, I'm finding that no matter how small the risk, I still worry about my little girl.

So I'm relieved, happy . . well, ecstatic to report we had the Echo yesterday and her heart, just like the rest of her, is PERFECT!!! We also got another glimpse at her face and the tech was so awesome she even flipped on the 3D machine and let us get a peak at her face in 3D. She didn't cooperate much but it was still awesome!

Here are some pics from our ultrasound and an update on the belly:

This is an updated profile shot. It's so weird because I always hear moms gush about their kids ultrasounds and they just all look the same to me. But, seriously, I love her to death and everytime I see her I think that blurry, black and white, barely distinguishable image gets cuter and CUTER!

This is her being a little shy. The ultrasound tech grabbed the 3D wand and tried to get some 3D images of her face and she kept turning away (facing my spine) and putting her hands up over her face. But I still think it's precious!

And this is the only 3D shot we managed to get of her face. Not the greatest but still adorable!

Okay, this was the last belly image I shared at 15 weeks or so.

Here it is at 18 weeks. Not a great shot. It was night and for some reason I got a wild hair and grabbed my camera. The light was horrible but, oh well, you get the picture.

And here we are yesterday at 21 weeks and 3 days. Holy moly! I'm getting HUGE!

That's it for now. . . other than to say I'm loving every minute of this and can't wait to meet her this winter!

~Layne

Monday, September 13, 2010

JDRF: Advocacy or Abandonment?

I read this guest post over at Kerri's blog today and it really got me fired up. I have so much to say on this topic. It's really bothered me for a while but I never really spoke out. Today that ends. I'm fired up, so it's on!

The post over on SUM is basically about how Type 1 diabetes is characterized as a child's disease. The face of the disease is a child's face. If you are a child with diabetes, for the most part, you are given pity, support, understanding, tolerance, etc. A slew of things that (for good or bad) seem to be reserved for children alone. Because as an adult with diabetes people seem to assume it's your fault. That you are too fat, eat too poorly or don't exercise enough and that if you took better care of yourself you probably wouldn't have diabetes anymore. For some (but not all) people with Type 2 diabetes this may be true. So as adults with Type 1 we are stuck in between two worlds that we don't fit into. And we are squarely unwelcome in both! We aren't cute, innocent, blameless children and we definitely aren't in the same boat with adult Type 2's. So where do we fit in?

The JDRF is supposed to be the organization that supports us. It's "the leading charitable funder and advocate of type 1 diabetes research worldwide," according to it's website. The "juvenile" in Juvenile Diabetes is really meant to describe the type (as in Type 1) not the fact that it's only for kids. Because guess what!?! I was diagnosed with "juvenile" diabetes when I was in elementary school. It's been almost 20 years and I'm no longer a child but I'm still diabetic! It's so frustrating to go from feeling like you had all this support as a kid but 20 years later no one cares anymore. And in some ways it's ironic because there are a whole slew of new issues to deal with as an adult (relationships, jobs, insurance, pregnancies, etc) that you still need support with and now. . . nothing!

Why did I become "unsupportable?" It's not like they never wanted me. I was a great sob story when I was 8 years old! But, for those of us lucky enough, we grew up! Which I would think is what all JDRF members and parents and advocates want! So why do they abandon us in their reach-out efforts? Do parents of children with Type 1 feel like we'll steal their kids' spotlight? Would they want the advocacy and reach-out efforts for their kid mercilessly dropped once they reach the age of 18?

I lied a little bit a few paragraphs ago. I said I never really spoke out about this issue but that's not entirely true. Last year, I posted about the guilt-trip letters I receive in the mail from the JDRF begging for money. The difference there was that I was just ranting angrily. I didn't really know why I was mad I just knew that I was! But the recent advocacy for adult Type 1's has made me realize what is needed for our community and why the letters, fundraising efforts and overall attitudes of those in the JDRF and the media and public in general make me crazy.

It's because they make me feel like I'm not worthy of a cure anymore. Or like I'm not worth supporting. Or advocating for. They make me feel like, now that I'm not a kid with a chronic illness anymore, my problems have gone away. But, in some ways, they are just starting as diabetics enter adulthood. I worry constantly about the financial strain that my disease would take on my family if I ever lost my insurance or if Brad or I ever lost our jobs. I worry about my unborn baby and the impact that every bloodsugar has on her health. There are all new considerations for adults with this disease and everyone of us with it (adults, kids, Type 1's, and Type 2's alike), we all deserve a cure. And we all deserve for the whole truth to be out there. At the very least, we deserve a realistic view of diabetes from our own advocacy group! And this is where JDRF has dropped the ball.

Those ridiculous letters that they send out begging. . . sorry, campaigning for money just turn me off. The are so overdramatic and sensational that I can't help but get annoyed. As a kid, I didn't really like them because I felt like they begged for people's pity. I didn't want anyone's pity, I just wanted a cure. As an adult, I feel like they isolate a huge part of the population who deals with this disease. Rather than focusing on diabetes as a disease that will follow us throughout our lives, it focuses on how sad it is that Tommy doesn't get to eat cake at his best friend's birthday party! Dude! That's the least of all of our worries!

This type of fundraising does nothing to raise awareness of the truths of diabetes. It has very little to do with me and my diabetes and what I go through on a day to day basis. It makes me feel like they are using the real kids with diabetes in the stories to gain sympathy and money and at the same time they are devaluing and dismissing the adults with Type 1 out there. And after reading them, I just get angry and disgusted and throw them away!

I feel like these letters have nothing to do with me and are trying to make me feel sorry for something that I experienced. Not only do I know what that kid went through (I was that kid!) but I know what every child with diabetes will go through. The JDRF, the media at large and the general public are not doing anyone any favors by only presenting half-truths. They aren't tugging on my heartstrings because I was the kid in those letters and never wanted the pity and sympathy that they are desperately trying to evoke. Plus, it's insulting and patronizing to send letters like that to ME, let alone to the general public!

I think Scott definitely has the right idea with his efforts to pull JDRF into the fold when it comes to raising awareness for and supporting adult issues with diabetes. I definitely will be following his efforts and giving all the support I can!

~Layne

Friday, September 10, 2010

Did I just? I think I did . .

So, when I was exactly 16 weeks pregnant (August 6th) something strange and wonderful and exciting happened! Brad and I woke up early that day, thanks to my inability to sleep as of late. We were hanging out on the couch and he had his arm draped over my belly with his elbow just below my belly button. I felt a small twitching right where his elbow was, like maybe a muscle in his arm was twitching. I asked him if it was and he said no. So I had him move his arm and I still felt it! I felt like it was just below the surface! I have no idea but I think it was the baby! And when he put his arm back on my belly it started going faster . . . I think this kiddo is already in love with her father!

For the rest of the day I waited for it to happen again, but nothing. Until Raina crawled on my lap that night. Again I started feeling some twitching right where she was leaning on my belly. Eventually she got up and left and the twitching kept on going for another few minutes!! I felt like if it was the kiddo, we had established that she likes her father and her dog but she's not really into performing for her mother! ;-)

So, over the next few weeks it turns out some of the movement I felt early on really was her movement and others were who-knows-what. But now I'm 21 weeks along (yay for being half way through!!) and I'm definitely feeling her kicks and tumbles. It's awesome. I never felt the swishy, water-y movement that my mom and a couple of my friends say they felt. Mine start out feeling like muscle twitches and have escalated to feeling like tiny pokes. And occasionally I can tell that she's actually rolling because I can feel the tumble! But they all come from my lower abdomen, near my pelvic bone. It seems like I can feel them the best when I'm sitting up and especially when I lean forward. Which kinda makes me feel bad because I always imagine that it's because I'm squishing her! :-)

When the movement first started (at 16 weeks), I would go days in between feeling anything. It's gotten more and more frequent but still I will go hours without necessarily noticing movement. At first, I think it was because the movement was so light that I really needed to be sitting still to notice it. But now she is moving more and more and I've noticed a bit of a pattern. They say most babies move more in the evening and she is no exception to that rule. She doesn't move a whole lot in the morning when I first get up. It usually starts a couple hours later. But her most active time is in the evening between dinner and bedtime. So, she is a night-owl like her momma!

I have been trying and trying and TRYING to get Brad to feel her but no such luck so far. I know that he COULD because I can feel her with my hands. But this little thing is very uncooperative. She'll start moving and just when I think she's going to keep it up, I grab his hand and put it on my belly. And then she stops. If I could just time it to where he was touching her right when she landed a nice kick I really think he'd feel her! I've also tried to listen to her heartbeat with my stethoscope. (No! I'm not crazy! Supposedly you can hear a fetal heartbeat with a stethoscope at around 20 weeks.) But I've had no luck. I asked my doctor if she'd ever tried and she said that she did try on herself when she was pregnant but was never able to hear anything that early. She said give it another shot around 24 weeks.

Brad is so excited about this little girl. And that's almost the best part about this whole thing, seeing how happy he is. He's never been around babies and has always been a little awkward around kids but it doesn't seem to matter. He is excited about everything to do with this baby! The room, the name, everything! The other night we had dinner with his parents at their house and he asked about some of his childhood books. My mom had just given me my old childhood books and we were going through them and I was so excited to read them to the little girl when she came! And I think that got him excited too because he asked his mom if he could have some of his old books for her library.

The whole time we were driving home that night, all he could talk about was how he was excited about getting his books for her, especially the Dr. Seuss books. He said he couldn't wait to read her "How the Grinch Stole Christmas" for her first Christmas! And he was just grinning the whole time!

Sorry, this post was just kind of a ramble. I felt like I hadn't updated in a while and there were so many things that had been running through my mind. In other news, the blood sugars have definitely been changing over the last few weeks and the belly has too. I plan on writing posts about both soon!

~Layne