Saturday, June 23, 2012

Responsibility

Responsibility is a big word. It is a word that I think many people don't like to hear. But it something we all have, even if we choose not to live up to it. Some responsibility is put on us by society. Some by our families. Some by our friends. And sometimes responsibility is something that we put on ourselves.

I started this blog over 5 years ago. Blogging was something I did for myself. I needed it. Blogging, for me, was therapy. It was a way to have a diabetes support group. It was a way to have a therapist sitting in a high backed leather chair with his notebook while I talked. Did you guys know you were my therapists? You were. You are.

After a while I realized that blogging was more than therapy for myself. I realized it was therapy for others living with diabetes as well. If my reading YOUR blog is therapy for me....wouldn't you reading MY blog be therapy for YOU? Okay, I know that's not always how it works, but the premise is there. Basically, we are a community of people who are hear to help each other. To listen, to support, to be a voice for each other.

We all know the lack of mental health care that goes on with diabetes. Doctors address our physical health, but all too often over look our mental health. For me, and I know for many of you, that is where the D-OC comes in.

I know we all have our "thing" when it comes to blogging. Some of us are more inclined to write about news relating to diabetes. Some of us write about being parents or caregivers to someone with diabetes. Some of us are more concerned with diabetes research or technology. Just like in real life, we all have our areas of comfort and expertise.

For me, it is about letting people living with diabetes and caring for those with diabetes know that they aren't living this life by themselves. There are so many others out there going through the same things. It's part of the reason I started the Your Voice project. And while it may have slacked off after a while, I still believe in Your Voice and I believe in what this community is doing online and offline.

Cherise and DSMA and Blue Fridays

Kim and You Can Do This

Karen and Diabetes Blog Week

LeeAnn and the Diabetes Postcard Exchange

And I know there are many others out there that I'm forgetting. Great projects and ideas. But what do all these things have in common? They are about helping people find support and understanding. They are about people making connections online and in the real world. It's about filling in the gaps.

At some point in my blogging "career" (can I call it that? It feels like one) I could have stopped. There are even times now where I just want to throw in the towel and walk away. There are times that I don't want to deal with diabetes at all, let alone write about it in my free time.

But that's where I feel responsible. I feel responsible to the people who read my blog (however many there are of you). I feel responsible to the newly diagnosed person (or parent) who googles "diabetes" and manages to run across my blog. Six years ago I felt completely alone with my diabetes. I feel responsible to make sure the no one with internet access and a search engine ever as to feel that way again.

Sure I want doctors and other medical professionals to address the mental health needs of people living with diabetes. But until that becomes a priority in their world, I feel it's the responsibility of the Diabetes Online Community to fill in the gaps the best we can.

We are our own support group. We are our own advocates. We are our own health care provider. But we're also each others'.

Monday, June 18, 2012

Stingers and Creepers

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

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

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

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

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

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

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

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


Such is life.

Wednesday, June 13, 2012

Guest Post - Diabetes is No Picnic

Yet again, I've come up on a major writer's block. And yet again my friend Sherry has sent over a guest post. Sherry, you are not only one of the sweetest, most sincere people I know, you're also a lifesaver when it comes to my blog. :)

Sherry's other posts can be found on the Your Voice page. Want to submit a post as well? Click HERE for instructions.

It was like any other summer day in the park. Except it was hot! We questioned our sanity at coming out on a day like that but we were already sweaty, so why not just stay a while?

There were 7 of us. Young, healthy looking, active---amid the blankets and picnic lunches and toys that one would play with in a park. We don't know each other well, or hang out together; all we have in common is this group--yet we share the deepest of bonds.

After some general tomfoolery and gadding about, we all sat down to eat together. Nothing unusual about 7 friends sitting about on blankets, opening lunches and gabbing about life in general. We looked just like the rest of the folks in the park that day. Except for one thing.

As lunch began, we all pulled out blood sugar meters, test strips, insulin pumps and syringes. Several minutes of poking, testing, bolusing, counting carbs, injecting, etc. followed. After all the medical hoopla, lunch went on as normal for anyone else. We even went through the list of new restaurants in town, deciding together which ones were the best!

This was one of those 'wow' moments that sneak up and shock me so much. You see, all 7 of us had juvenile diabetes. Four of us were diagnosed as children, two as adults and our 23 year old newcomer was only diagnosed a few months ago. This was our monthly get together--a tradition for the last couple of years since we found each other on the internet and discovered that we lived close enough for some face to face fellowship. Our leader and founder had lived with the disease since childhood was lonesome for the support and fellowship she had had as a child with diabetes. Since she had grown up, there wasn't the fellowship anymore. Adults with type 1? That sounds like a paradox. It was..... only several decades ago. Type 1 diabetes was rapidly fatal in our grandmother's day and age, but it isn't anymore!

Anyhow, since it was way too hot to play, we spent our meeting lying about on blankets and chatting. JDRF has a new publication for adults with type 1 which discusses situations unique to us. We shared with each other how diabetes affected our relationships with friends, our jobs, our marriages and our general lives. We spent time ranting about how type 1 is totally butchered by the media, making our lives much more difficult. We shared about how dating is affected- how one girl had had a date read her medic alert bracelet right on her arm on the first date!- and how the guy never came back again. We praised our boyfriends, husbands, mothers and fathers for sticking with us through all the highs and lows and juice stained clothing. Some of us wondered if we would ever be able to have children, or fly an airplane, or make it through grad school alive. One of us worried out loud about getting a severe cut on her leg and not even feeling it when it happened. Another of us was frustrated at the huge medical bill acquired for dehydration due to an innocent little stomach bug. One of our youngest members had just been diagnosed with bleeding in the eye. We wondered about our bodies being ravaged in places we couldn't even see. We talked about losing our eyesight, amputating our limbs and worried that we would someday very soon not be able to get the insulin we need to survive because of the new healthcare reforms. Would the politicians decide we weren't worth the cost of the supplies we need to live? We talked about the fact that none of us would survive this disease.....that in one way or another, this disease would be the major cause of our death. There we were, 7 people not even middle aged, sitting in the park on a sunny Sunday afternoon, having a conversation like that.

As the conversation died down, one by one we fell silent. Unusual for this chattery group. We just looked at each other, out of things to say. We all looked up when we became aware of childish sounding music wafting on the breeze from an ice cream truck. How ironic, I thought. After the conversation we had just had, why should we have to listen to an ice cream truck? None of us could even eat the stupid stuff without major hassles.

We decided that, although diabetes is no picnic in the park, we were just going to lift our heads high and live life to the fullest. We weren't going to miss a single thing we wanted to do!! We weren't going to let this disease steal our lives. We were going to live out the motto of our leader: helping others to live to their healthiest potential. So bring on the ice cream truck....we can handle it! We may even eat some of it! Ha

Saturday, June 2, 2012

The Friendly Side of Flying

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

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

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

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

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

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

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

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