Tuesday, November 23, 2010

Featured Blogger of the Week: Nov. 22-26, Post #1

Featured Blogger of the Week: Nov. 22-26
Allison Blass, Lemonade Life

Post #1

Gratitude

When I was diagnosed with type 1 diabetes at age 8, I was not happy. Gratitude toward diabetes was the furthest thing from my mind. I hated diabetes. It was annoying. It hurt. It stressed me out. It stressed my parents out. It made me do things I didn't like. I couldn't eat or drink the same things that my little brother could. It was horrible.

As I grew up, my attitude toward diabetes did begin to change. The catalyst for that change was diabetes camp. I attended a diabetes camp called Gales Creek Camp, located in the forests of Oregon. It is beautiful. There is a swimming pool, a big field to play games, plenty of forest to go hiking, and a literal Gales Creek. Our camp counselors were hilarious and fun, and some of them even had type 1 diabetes too! They totally "got" diabetes. I met lots of kids with diabetes, and I even joined a little "clique" called the Camo Crew, which was made up of 7 of us, 4 girls and 3 guys. We gave ourselves our own "camp" nicknames (all our counselors went by nicknames, and we all wanted to be counselors someday). I was Angel. We ate together, stood in line to get our blood sugar checked together, and we always had our bunks near each other. There was a sense of family with the Camo Crew, a familiarity that I have never had with any other group of friends.

When we weren't in camp, we kept in touch through the phone, email and Instant Messenger. We sometimes saw each other at other diabetes events around town. I lived near a couple others, so we would sometimes see a movie together or just hang out at each other's houses. One guy from the Camo Crew was even my prom date! Like most groups of hormonal teenagers, we had our ups and downs. We fell in love, we broke up. We shared stories and secrets. We trusted each other, and sometimes, because people are stupid, that trust was broken. I learned a lot about myself, both as a person and as a person with diabetes, from the Camo Crew. Perhaps I would have found that experience through another group, but I think that the emotional bond and instinctive honesty that came with sharing a chronic illness made the Camo Crew exceptional.

Nowadays, we don't keep in touch as often. Nothing gold can stay, right? Through the miracle of Facebook, I still have some idea of what everyone is doing. Two are married, one of us (me) is engaged. Another has two kids. Two of us live on the East Coast now, while the rest are still in Oregon. It certainly isn't the same as the reunions at camp. Luckily, I feel like I have joined a new Camo Crew - and it's called the Diabetes O.C. Even though I don't see most of the people in the D.O.C., we share that same familiarity and bond that I had when I was a teenager going to camp. We "get" each other in a way no one else can, and I am incredibly grateful for that.



Friday, November 12, 2010

Featured Blogger of the Week: Nov. 8-12, Post #2

Featured Blogger of the Week: Nov. 8-12
Moira McCarthy, Parent of a child with type 1 diabetes

Post #2

I see real truth in the statement, “sometimes you’ve just gotta laugh.” Life with the ‘slin on board is no different. In fact, I might argue that when you are on the front lines of battling a cruel enemy who is (for the time being) completely refusing to retreat, laughter is not just a good idea: it’s a necessity.

So today I’ve decided to use this blog to share with you some of the funnier moments in my family’s 13+ years with diabetes on board. Some (who are not on this front line) may see it as gallows humor. I don’t. Because . . sometimes you just gotta laugh. Read on and I encourage you to share your own funny diabetes stories in the comment area at the end.

Here’s what’s made me laugh:
• The time I was standing at the sign in desk at my daughter’s elementary school with some other mom’s I don’t really know and a teacher who also understood it’s important to laugh walked by, pointed at me and said to the aid signing us in, “Be careful! She carries a 504 and she’s sooooo not afraid to use it!” The other moms were quiet for a moment as I laughed and the teacher laughed. Then one mom politely said, “My husband is into firearms too. But only for hunting.” God Bless her na├»ve soul.

• The time my daughter’s swim team was counting on her relay team to seal the deal for the team win and everyone was wondering: where the heck is the 10 and under relay team? It was not unusual at our swim club for the kids to go into the showers as a group and run hot water over their heads for just about forever, so I assumed they were there. I stuck my head in the locker room and yelled “Hurry up girls!” but heard no shower. Out they came, parading to the blocks (that they dive off of) . . . each at every one of them, along with the 12 and under girls as well, with a quick set infusion set inserted into their left front thigh. OMG were they proud, showing solidarity to their teammate like that. Some parents smiled; others freaked out (could they get aids? Seriously . . some thought that) I of course was laughing my butt of trying to imagine how I was going to convince insurance why I needed more of the “sites” that delivered the life sustaining insulin to my daughter’s body. It was one of the funniest, cutest, most touching things I’ve ever seen. I even enjoyed the parents freaking out.

• The time I was at the stable watching my daughter horseback riding and she was thrown. Only the tubing to her insulin pump caught on the horn thing on the saddle (obviously she rides and I don’t) and she was dangling by her pump tubing. (!!!) I ran over and said, “Are you okay?” to which she replied, “man, this tubing is durable!” I think she was seven. Tubing. Takes a licking and keeps on ticking.

• The time on the sidelines of the youth soccer game when my daughter had just rub back on the field after a quick blood check and insulin bolus and a mom I did not know pronounced loudy – to me and to everyone – “Did you know there are pills you can take for that?” The funny part was – I kid you not – it was like the entire field of players and parents watching all stopped leaned in and waited for my response, which they knew would be snarky and comical. But darn, I don’t remember what I said. I do know my sister still howls about it. As she said, “Every single person there could not WAIT for you to respond.”

• The time we got to the end of the JDRF Walk to Cure and my friend's son, who was walking with diabetes for the first time said, "So, I'm cured now, right? We just walked to cure, right?" Adorable . . and tragically funny.

• The time we attended a baseball game with a bunch of DC staffers (back in the days when they could take such gifts) to sway them to care about diabetes and my daughter, newly on the pump, was able for the first time in a long time to eat ANYTHING she wanted. My husband kept ordering her things and pushing the buttons on the pump with glee. I was horrified because the staffers did not get it at all ("I thought kids with diabetes could not have treats?") I was concerned but there was no stopping my husband. At least Pedro struck out 14 that day.

• The many times in the supermarket or in the halls at school or in the mall when we’ve gotten strange looks when someone has overheard me saying to my daughter “You’re high again? Isn’t that like the third time today?” Ha! Why explain and ruin their shock?

So let’s have it. What are your funny moments?

Tuesday, November 09, 2010

The Diabetes Dad, Six Diabetes Things

Featured Blogger: November 9
Tom Karlya, Diabetes Dad

My Diabetes Six in recognition of D-Blog Day 2010

1. Don’t Do Nothing. I have been saying it for years. More people need to be involved in causes against diabetes. Whatever it may be that will get you going; raising money for a cure; educating the so many who need it, whatever is important to you but do not sit idly by and wait for someone else. Get involved today. Diabetes is a 24/7/365 battle, no one went to war for 3 weeks and went home. We have to battle for as long as it takes. I know; everyone is busy. Everyone has to take care of their child, pay bills, and live life. Ask yourself, “How is it that so many important people are involved in diabetes causes?” The answer; they did not find the time, they made the time. No one wrote a book or did a story about someone who was ‘going’ to do something. How about you?

2. Kids with diabetes are just kids. To the school personnel, the relatives, the reps, the insurance companies, the drug stores, the Docs, the CDEs, those who are funding sources, and yes even us parents; our kids are amazing in how they deal with their diabetes. Their childhoods stolen, they do everything they can to get back to what they were used to. Diabetes will not allow them all the way back but it seems there is a row of people who also get in their way as they try. Yes there is much help needed during their journey but always remember…..they are still kids. (Having a problem with that?---beg, borrow, or steal your way to get to the CWD FFL conference every year in Florida. www.Childrenwithdiabetes.com )

3. Wherever you spend your time supporting; never stop asking questions and never stop making sure they know why they are in existence and more important; why they were started. We’re at the Diabetes Research Institute (www.diabetesresearch.org ) because the science and the way we go about it, is an open book to anyone who is involved. Our volunteers challenge us daily and we either are; or we are not. If we were not, there would be a whole list of people moving somewhere else. But this is where we have decided to be; if you have no place; I would suggest here. If you are active with another organization, that’s GREAT! You are involved; always challenge your organization to stay the course of its mission, whatever it is. You have the right, ask questions. We will all win.

4. I will burn out when my children have that luxury. I’m amazed at the number of people who were involved in so many areas of diabetes (education, raising funds etc.) when their children were young but as they grew up they drifted away. There are always reasons but quite frankly, “I’m burned out” does not make the list. When the job is done, are our marching orders as parents and relatives in the name of those we love.

5. Respect people who do not go about ‘it’ (whatever it means) the same way you do. Different is not necessarily wrong and the way you choose to do ‘it’ may not be the only way.

6. Last, but certainly not least is to those who have diabetes. If you think the world is collapsing because you have diabetes, I cannot answer as if I had it because I don’t. I can tell you that the choices you make and the daily battles you have inspire me to try to change this world, for you. You amaze me with your drive to get back to what it was like when you did not have this disease. That drive is doing what you can to feel good so you can face another day. Don’t let anyone compare your disease to anyone else’s because everyone has to face what they have. I don’t have it but if giving it to me would have stopped just one young person from getting it; I would take it in an instant, because you mean that much to me. Please do not give up on you. I have the faith that you can change the world with a loud bang or with a steady and quiet approach. The change can be the world around you or living a life that has you in the best control because you will feel better. We, who do not have it, will never completely understand what it is like to have it but as our children; we do know the desire to take it on ourselves. Why? Because we love you. You are everything to us as parents. You are our heroes. We know we can be a pain in the ass to each other sometimes; we could do that even without diabetes. And when it just gets too much sometimes; all we can do is hold you and encourage you and look for that one day that our work has paid off and it has been reversed. I swear to you; we will only stop—when you can.





Sunday, November 07, 2010

Featured Blogger of the Week: Nov. 8-12, Post #1

Featured Blogger of the Week: Nov. 8-12
Moira McCarthy, Parent of a child with type 1 diabetes

Post #1

On August 25th I did the strangest thing I’ve done since diabetes entered our lives 13 years ago: I dropped it off at a door and drove away.

Sure, I made sure it was comfortable first. My daughter was starting her college life at George Mason University and I made durn sure she had everything she and diabetes needed. Cute comforter: check. Desk lamp: check. Awesome posters and decorations: check. Enough insulin to treat every single diabetes patient within a hundred mile radius: check. The only think I could not leave there was me. And as my husband and I took on the 11-hour drive home (thank you New Jersey Turnpike) I had plenty of time to ponder that.

For almost exactly 13 year’s I’d been the warrior diabetes mom. When she was little, my job was to truly be her pancreas. I counted every carb, noted every moment of activity, weighed out foods and measured impossibly small amounts of insulin into a syringe until she switched to pumping. Okay, so I didn’t give a lot of shots. (She likes to remind me of the very first one I gave her in the hospital. I pretty much wound up and smacked her with it. “Good job!” the training nurse cooed, “but next time, gentle.” My girl never let me near her with a needle again). But other than that, I owned her diabetes. And somehow, it made me feel empowered at times. I could be her protector! (And anyone who knows me and how stingy I am with exclamation point use knows I absolutely shouted that decree).

And then when she moved into the tween years, I became the worrier and nagger. If I had a dollar for every time I’ve said ‘Did you check,” “Did you bolus” “Are you high? And “Are you low?” I could fund the entire NIH Type 1 research program. But I’m here mom, so I did it. Diabetes seeped into every moment of my life. I became an uber volunteer, raising funds, running programs, chairing national government movements, doing national media appearances, waging my war any way I could. And somehow, that made me feel empowered even though I could feel my control slipping. She could try to rebel but I, diabetes warrior, would fight even harder.

Then she became a teen. A very busy, independent (and sometimes stubborn) teen. But even as she zipped off to sports and student council and dates and parties, her diabetes was right under my nose. It took up two huge drawers in our newly remodeled kitchen. It turned my daughter into a kind of Linda Blair at times (always lashing out at the mother, alas). I begged it to cooperate with her more. I begged her to lasso it in. It tore me to almost to pieces some days; left me speechless on others. I volunteered more; studied treatments and possible cures more and worried 29 hours a day about it (yes, it did feel like more than 24). I was starting to feel like William Wallace toward the end of the war, but gosh darn it, I was still battling the bad guy. This was my purpose.

And then she became a college girl. She knew a lot time ago she wanted to go to Washington DC, and I knew a long time ago I was going to have to let her. I stressed and panicked and planned and feared. I tried to come up with ideas (would she bond with one of my other diabetes warrior moms close to her college? Could they nag and beg and coerce her to wrangle in the diabetes?) I battled with her endo (who felt I should not let her go so far away). I literally had nightmares about how it would go (the kind that make you sit straight up, heart pounding at 3 a.m.) But deep down I knew something: I had to – for better or for worse – let her live her life.

It was really not that much different than my older daughter (who does not have diabetes). She was so shy, when we dropped her off at her college dorm five years ago I was worried sick. And she didn’t do well at first. (now of course shyness does not kill you in your sleep after a frat party . . . but still). Still – It was a challenge settling her into her college life, and in the end she thrived. But with my daughter and diabetes, I wondered how I would manage to do all the worrying and begging and pleading and nagging from a great distance?

Then as we drove away from that beautiful campus I realized how: I wouldn’t. For the first time in the 13 years since diabetes entered our lives I realized a great truth: It is my daughter’s diabetes and hers alone.

I feel guilty about this now – the break I have from the constant, well I guess it’s okay to call it despair even though we diabetes parents put a good face on it, right? I don’t really know first hand any more if my daughter is doing the right thing. And . . . as terrible as this sounds: It’s a wee bit freeing. I feel so guilty about that. Because I know it still grips my daughter’s every moment. I know she has older more experienced Type 1 friends teaching her the tricks of drinking (wouldn’t it be nice to just worry about what flavor you like and not the way different kinds screw up your blood sugars?) I know she is struggling with how to eat dorm food and not gain weight and still try to have some kind of decent a1c. I know she still hates everything about living her life with diabetes. I know the first weeks she kind of threw it all up in the air (thank God that ended well). But I only know this when she shares it with me. And even then, I can hang up the phone, go on with my day and not lurk around the corner to spy on her meter results.

I wanted to take it away from both of us by now. I swore I would not give up until she is cured and I will not. I wanted to shoulder every worry, every sadness, every moment of frustration for her until a cure was found. But the reality is, I cannot do that. I’ll be there for her when she calls and when she needs me. I still volunteer, I still raise money, I still work for awareness. But diabetes has given me a time out.

When will my daughter get hers?