Last weekend A-Flizzle and I hit the road to go see a Typical Type 1 and a bevy of Bob’s. Along the way we were fed by 13 Gypsies, a Bob and I went for a solid 24 mile bike ride, we all witnessed a catastrophic Contagion, had some times that were a little low and a little high (BG-wise), and we even managed to snap a few pictures along the way.
I was trying to think how I wanted to celebrate my very first blogiversary here at Diabetically Speaking. At first I thought of highlighting a favorite post from the past year, like this one, or this one, or even this one. But then I decided I wouldn’t do that. That would just be shameless. Instead of sharing another one of my favorite posts, I decided to share the story of how Diabetically Speaking got started. That is much more important than a post that I think stands out.
In 2007, a best buddy and I were out on A1A in south Florida going for one of our ritual weekend road bike rides. At some point he and I got to chatting about how I deal with my diabetes while we’re doing our long bike rides. That is far from a short discussion, but as we talked, I realized that I had a lot of experience with this disease. I had been living with diabetes for over 25 years at the time. Then to hear someone who doesn’t even have diabetes be so interested in my story, it really got me to thinking. What if I had a place to share my life with diabetes, and to be a voice for those that don’t have one?
I really thought hard about it as we ticked off the miles, and I left the bike ride that day so excited about my revelation of how I needed to start a web site called Diabetically Speaking to get my story out there. The idea didn’t get much in the way of support though, and it almost immediately lost momentum.
A year passed before the idea came up again. I purchased the domain name and got started developing what would eventually turn into what you are reading now. Unfortunately, I was going through a really rough time in my life, both personally and professionally, and I got as far as typing the name Diabetically Speaking in the blog title area before the idea ran out of steam yet again.
Almost two years passed where the only attention that Diabetically Speaking got was my annual renewal of the domain name and the server space that it was sitting on.
In February of 2010 I met A-Flizzle, and I had decided shortly before we met that I was done with living my life with diabetes in the closet. There is so much more to me than just diabetes, but diabetes is a very big part of who I am. Just about every decision that I have ever made was done so with diabetes in mind. The first time we met, I told her that I had diabetes. I may have also told her that I was bionic since I had the insulin pump on me and all, but still, for one of the first times in my life I didn’t hide my diabetes and downplay it as if it was no big deal.
And for one of the first times in my life, the person whose support I needed most, even if I didn’t quite know it yet, didn’t downplay my diabetes either.
After several months of encouragement and development, I finally launched Diabetically Speaking to the world on August 20th of last year. I’ll admit, my first few blog posts were a bit rough around the edges. It takes some time to find your voice, even on a blog. Now, of course, every post I write is completely perfect. (See also: sarcasm.)
Without support, there is very little in our lives that we can have success with. This blog hasn’t always been a success, and I don’t expect it always will be. We don’t grow by always succeeding; we grow by failing and learning how to do things better next time. I just hope that both me and this blog are here for a long time to connect, share, and be the voice for all of those with diabetes who are still searching for a voice of their own.
Thank you all for supporting Diabetically Speaking for the past year. Maybe next year we will all be cured and I can rename this blog to Diabetically Spoke.
Celebrating my 1-year blogiversary with a big ol’ M&M cookie (and 2 dogs who would be more than happy to celebrate with me!)
I can feel it. It is slithering in like a snake through murky water. It makes little ripples as it moves in, just enough to sense it if you’re looking for it, but not enough to visibly disturb the peace and calm of everyday life. It is sneaky, resting still when you’re looking for it the hardest, hiding in plain sight. When you’re back is turned, it is busy, wrapping itself around everything that is good and dragging it under the surface, dominating.
It makes things heavy, without trying to lift anything. It makes my heart pound, even when I’m calm. It makes me want to cry, but the tears just won’t come. It makes me want to scream, but the effort is too great. It makes me want to fight, when I have nothing to fight about. It makes me forget hunger. It makes sleep something that I can only appreciate because I hear others talk about it.
It is awful.
It makes things awful.
It makes me feel awful.
After all my years with diabetes, it wasn’t until very recently that I learned that depression and diabetes go together like stink and manure. A quick Google search will tell you that depression from diabetes is due to the the daily stress of diabetes management. All the pricking and poking and stabbing and pinching and squeezing and dabbing and dripping and wiping and changing and checking and fixing and… Okay, I can certainly see how someone would get to that conclusion. Diabetes management is exhausting, and maybe that is part of the depression and diabetes picture, but it isn’t all of it.
Some sources say that it is the consequences of diabetes that drives depression. Things like nerve damage, loss of sight, loss of feeling in feet and hands, and weight gain all contribute to this sense of hopelessness. Having had diabetes for 30 years, I don’t subscribe to that. The consequences of diabetes certainly are nothing to shrug off, but I know many people with diabetes today, and those that do have diabetes complications definitely do not let those complications rule their lives. These are some of the most admirable people I know, who carry on in a daily pursuit of contributing to the world and helping other people. That is their focus, so no, I don’t subscribe to the “Oh, woe is me…” reason for depression when you have diabetes.
Sources even say that depression is the reason for depression with diabetes. No, that isn’t a typo or me repeating myself. Many sites, including the ADA, say that because of depression we slack on good diabetes care practices like regular blood glucose testing, eating right, routine exercise, and sometimes even insulin dosing. While slacking off due to depression our health declines, and then we feel bad about it, unintentionally making matters worse.
Something that doesn’t get reported enough is the science that also comes into play with depression and diabetes. In Will Dubois’s book “The Born-Again Diabetic,” he points out the often overlooked malfunction in the serotonin level production of people with diabetes, which can affect mood and cause depression. Will believes that all people with diabetes should be on anti-depression medications, and I’m starting to agree with him. Diabetes is hard enough without having to deal with feeling awful about it for no apparent reason.
The problem I have with depression, besides the general feeling of “blah” that comes with it, is that there is still such a taboo about it. I have a hard time admitting it to myself when I get depressed. Even now, I’m not certain that what I’m feeling is indeed depression. It could just be that I’m worn out from all the stresses of work, life, and responsibilities. Nevertheless, once I can admit to myself that I’m having a bout with depression, I start to blame myself for it. Maybe it is because I haven’t been taking as good of care with my diabetes as I could. Maybe I haven’t been making time to exercise as much as I should. Maybe I haven’t been eating as well, letting excessive carbohydrates creep into my diet more than I should. Never in all my maybe’s do I stop to say, “Maybe what I’m dealing with is something that has nothing at all to do with anything that I’ve done.”
I have felt it all day today. I’m upset, for no reason. I’m aggravated and annoyed, when I have absolutely nothing to be aggravated and annoyed about. I’m tired, yet I can’t rest. I’m not hungry, yet I haven’t had anything more than a pot of coffee today. I don’t know what is wrong with me. I just know I’m not me.
I have an endo appointment coming up in a couple of weeks, and perhaps I will ask him about it. But I probably won’t. As unrealistic as I know it is, there is a part of me that is afraid I’ll be judged as being weak because I can’t deal with things on my own; that I shouldn’t feel the way I do, and the way I feel is nobody’s fault but my own. I don’t want another prescription to pay for either, another pill to take, and another something to have to do on a daily basis. I’m also as stubborn as a mule, and I don’t want everyone trying to fix me and telling me what I need to do. I really don’t want anyone telling me what to do right now. (I know, I’m real mature like that. [sarcasm]) That sort of mentality is probably why the ADA says that depression begets depression. Writing this post took a tremendous amount of my courage, and I just don’t know if I have enough left to face depression (if that is even what this is) head on in the clinical setting.
I’m trying my best to get through this funk. As much patience as I need from others, I also need to be patient with myself when it comes to navigating my way through it all. I’m going to stop stressing over the fact that I can’t keep a CGM sensor on my body for more than 24 hours before it falls off, no matter what kind of sticky substance I put on or over it, and keep trying to find a solution that works. I’m not going to stress out over whatever my next A1C is going to be, and just focus on getting through diabetes one day at a time. I’m going to try to not carry around the guilt of low blood sugars that sometimes happen that I need help with. I’m going to start riding my bicycle again, because there is no room for all this baggage on the road bike, and it is really hard to have a bad day after you’ve started with a good bike ride in the morning. I’m going to get things that are broken fixed, so I can stop looking at broken things (like my TV, washing machine, and my old cruiser bicycle).
I’m going to do what I do best: Focus on the positive.
And somehow through all of this, I will get the most important broken thing of all fixed…me.
Today’s Diabetes Blog Week topic is diabetes bloopers. You know, those things that make you go, “D’Oh!” and facepalm yourself. I’ve had my fair share of diabetes bloopers: Dropping & shattering glass vials of insulin, running off on trips without all of my diabetes supplies, forgetting to dose for a meal, forgetting that I already dosed for a meal, finding the cat playing with rogue pump tubing, catching the dog gnawing on a perfectly good tube of glucose tabs…the list goes on and on.
The blooper that is really on my mind today is the one that my pancreas made 30 years ago when it decided to quit working. Or maybe it was my immune system that decided to work too well. Or maybe it was because I had chicken pox. Or maybe it was because someone got me wet or fed me after midnight. Or maybe it was because a butterfly flapped its wings in China. 30 years after the fact there is so much more we know about diabetes, but what exactly causes it and how to cure it are still not on that list, despite what we were told about how close we were to a cure when we were diagnosed.
Today is a day of celebration, of blessings, thankfulness, and appreciation. I have learned more in my 30 years with diabetes than some people learn in a lifetime. Living with diabetes has taught me so much, and coupled with other life lessons, I would be remiss to not stop for just a moment and appreciate the gifts that I have been given…thanks to diabetes.
The 1st 10 Years
- If you’re low, anytime is snacktime.
- Bananas and peanut butter on vanilla wafers is the best snack in the world.
- You can’t go play when you blood sugar is high. But if you can sneak away when your parents aren’t looking, it’s fair game. The back door doesn’t squeak and make noise like the other ones do.
- Swimming always makes you go low.
- Visiting the cute nurses on the Pediatric floor at the hospital when you’re there for lab work is always a treat. They know you by name.
- When you hear the term “A1C” you think of steak sauce and hamburgers.
- You don’t know anyone else with diabetes.
The Teenage Years
- If you’re low, it’s a nuisance, and you have to stop what you’re doing and take a break to feed it. Not always ideal when you’re being paid hourly at a part-time job.
- Whatever is fast and convenient is the best snack in the world.
- You hardly notice when your blood sugar is high. Until it makes you feel awful. Then it is all you notice.
- Swimming still makes you go low.
- Visiting the cute nurses on the Pediatric floor at the hospital when you’re there for lab work is still a treat. Other floors are acceptable as well, as long as there are cute nurses. You know THEM by name.
- When you hear the term “A1C,” you also hear words like “goal” and “lower.” Those cute nurses are a good distraction.
- You’ve heard of other people with diabetes, but you still don’t know anyone that has it.
The Last Ten Years
- If you’re low, your CGM alarms and you drop everything and treat it. Except when you have low-brain and can’t seem to focus. Then it becomes more of a struggle, and is sometimes followed by a hangLOWver.
- Cheese, nuts, and other low carb foods are the best snacks in the world.
- Because you are in better control of your diabetes, you can feel a high blood sugar in the upper 100’s now. 200+ makes you feel like dog’s ass.
- Swimming still makes you go low, and now you have to replace a pump site when you get done because the sticky doesn’t stay stuck in the water. You are able to ride a bike for over 100 miles in one day. You’ve discovered OTHER activities that have the same effect as swimming on your BG’s, and are just as much fun.
- Visiting the cute nurses, wherever you can find them, has become a rarity. Now you mostly settle for Helga, the former wrestler with the mustache and gallon sized syringe and harpoon needle to do your lab work. She knows you as a number.
- When you hear the term “A1C,” you start thinking all about decimal pointed numbers like 5.6 and 6.5.
- You meet an amazing community of people online and in real life who also have diabetes. You start a blog, and start sharing your life with diabetes. They inspire you.
The Next Ten Years
- Your diabetes is tightly controlled, and you don’t have any of the complications that others who don’t take their diabetes seriously often suffer from.
- You’re slim, fit, and eat right so that you’re able to do the things you love and experience the world. You look fantastic naked.
- You accept that there will always be things that make you go low. You’re prepared for them, and never let diabetes keep you from being able to do anything that you set your mind to.
- You have a family now, and your diabetes is not the center of the universe, but just a piece that helps explain your awesomeness during bedtime stories.
- You vow to only have lab work done from cute nurses in the future. You have diabetes, so you deserve it.
- Your doctor rarely mentions the term “A1C” anymore. He’s more interested in what awesome things you did in the last three months so that he has success stories to share with his other diabetes patients.
- You continue to write about diabetes, speak about diabetes, advocate for diabetes research and better treatments, and share your world with diabetes. You challenge others to take control of their own diabetes, and cherish those stories of how you inspired someone else to save their own life.
Today, May 11, 2011 is my 30th Diaversary. Thank you all for being such an amazing part of it.
“You only live once, but if you do it right, once is enough.” — Mae West
Exercise, for most folks, is hard to get around to doing. Our days are consumed by so many things that we simply don’t always feel there is enough time to add exercise to the mix. By the time we get up, get dressed, work all day, come home, make dinner, eat, wash dishes, chase the dog, pet the cat, do laundry, get a shower, and try to relax for five minutes, there often seems to be little time left to do much of anything else. That doesn’t even factor in those folks that have kids, and all the shenanigans that I can only imagine (for now) comes with offspring.
In the late Summer of 2005, Hurricane Wilma came roaring across the southern part of Florida and left most of us without power, transportation, and necessities for days, and in some areas even weeks. The local weather coverage had prompted everyone to be prepared for a “mild Tropical Storm,” but they did not anticipate that the storm would gain strength while crossing over the Florida Everglades and pound the opposite side of the state, where I was, as a Category 3 hurricane.
While nothing like the major disasters of Hurricane Katrina and the tsunamis in Indonesia and Japan, Hurricane Wilma still left us in a catastrophic predicament. Like fools, none of us had taken the forecast seriously after being told to expect nothing much more than a mild thunderstorm. Meanwhile, the gated archway at the entrance to my apartment community had succumbed to the winds and had landed in a heap of rubble (blocking our escape by car), roads were closed and impassable, power lines were laying on the ground with no indication as to whether or not they had electricity coursing through their veins, and a mandatory curfew was in place from dusk to dawn for all affected areas of southeastern Florida. Everything was a mess, and a dark mess too after sunset with no lights…anywhere. Because of all the lights, stars are not a sight you get to see in south Florida very often, so it was very surreal looking up and seeing them in all their sparkling glory.
Word eventually got to us that some areas had power and supplies, yet there was no way for me to get to them. I was an easy 200 pounds heavy at the time, out of shape (unless you consider “round” a shape), and hadn’t made exercise a part of my life since grad school. It was then that I realized the perils of my choices that had left me physically incapable of getting from points A to B, so I vowed that I would never get stuck in that same situation again.
That was when I started cycling. I went to a bike shop nearby and overpaid the owner for a bike that I could ride a fair distance, and would withstand the abuse of a 200 pound gargantuan (see also: fat ass). At first I couldn’t ride but maybe three miles before I would be out of breath and energy. But I kept riding, day after day, and I got stronger, and I stretched those three miles to four miles…
…then to six miles…
…then to ten miles…
…then to 13 miles…
…and by the following June I did my first 26 miles in an organized charity bike ride.
By the end of that Summer in 2006 I felt that I’d earned a better bike, so I got a Trek 1500 as my first road bike, and I have been pedaling ever since. I’ve wrote before about how cycling benefits me both physically and mentally, and long endurance riding comes with its own share of challenges, but I know now that in an emergency I could absolutely get from points A to B, and probably to C and back again if the situation called for it. Last April I completed my third 150-mile bike ride from Miami to Key Largo and back.
In my case, dropping the weight and getting fit was a side effect of my desire to be able to get to where I needed to go. In doing that, I discovered a passion for a sport that has partially defined who I am today. No matter your circumstances, don’t wait for a force of nature to force you to exercise. Get moving now, and be the master of your own disaster!
This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/march-dsma-blog-carnival.
When I set my goals at the beginning of this year, #1 on my list was to get my A1C down to a 6.2 or better. That is a formidable goal, trying to achieve an average blood glucose over time of around 120, depending on what research you consult. At my last endo appointment back in December of last year, my A1C was still reasonable, but it had ticked upwards. I couldn’t let that upward trend continue.
I had gotten my Continuous Glucose Monitor (CGM) and new pump just after my previous appointment in September of last year, and with all the change, I was burnt out. Or maybe just overwhelmed. But really, is there a difference?
I was wearing my CGM intermittently, and was dealing with major information overload with all the beeping and pricking and checking and counting and pumping and beeping and…I was exhausted.
After I wrote my A1C down in my notes, and realized that I had allowed my control to slip in the short three months since my previous appointment, I knew that I had to turn the ship around. I don’t want my A1C to continually creep northward, and me pay for it with problems down the road. I have too much life and dreams ahead of me to get lax with my diabetes management.
So I sat myself down and gave myself a stern talking to. I said to myself, “Self, all is not lost. I want you to look in that mirror, and I want you to repeat after me. I can do better. I have some awesome tools to help me get to where I know I can be. I can wear my CGM all the time, and not take several days off between sensor changes. I can carry around glucose tabs right there in my little pocket to treat a low. I don’t have to be a great diabetic. All I have to do is be the best Martin I can be. Because I’m good enough, I’m smart enough, and doggone it, people like me.”
I’m glad we had that talk. Since then, I’ve done really well with wearing my CGM. Every time the sensor battery runs out of juice, it hits the charger, and I’m already putting a new site in and getting everything ready for another round. I’ve gotten to where I really don’t enjoy being without my CGM, and am hoping that I didn’t do too much damage for all the years before now when amazing technology like this didn’t exist.
Lows are still creeping around occasionally, but they are manageable. Nothing a few glucose tabs can’t fix in a pinch. I expect my CDE and endo to want to make some adjustments, and I’m open to that. I’ve started a low-carb journey now, so I don’t expect that I need as much basal rate insulin at certain times of the day as I did with a diet heavier in starches.
Something else that I’m not happy with myself about is that I let myself get lazy, and stopped exercising the way I physically and mentally need to. The scale showed me the truth about that. So far I have lost six pounds, down to 184 lbs. It’s not a lot, but it’s progress, and that is the most important thing right now, to be moving forward. I’m making some big changes to my lifestyle to eat smarter and make better choices. I have my eye on my goal cycling weight, and to slim up and firm up so I look good naked, or at least in a swimsuit. Yes, I’m vain like that.
Back to the A1C, I know that we can’t base our entire diabetes report card on the A1C alone, but it still resonates with all of us where we are in our journey with diabetes when we see that number. I am confident about this upcoming appointment. I am determined. I have a plan. And it’s true, I don’t have to be the best diabetic. I just have to be the best Martin I can be. The rest will find its proper place.
With the exception of a couple lows in the past few days, my blood sugar levels have been exemplary lately. I mean, in serious 2011-goal-A1C-of-6.2-or-better getting contention. I have my CGM rates set to alarm if I drop below 70 mg/dl or spike higher than 160. Just the other day I was 20 minutes (not units…MINUTES) away from getting a no-hitter in that tight range. The stupid dawn phenomenon managed to thwart my efforts in the early morning hours with a CGM reading of 165 around 4:00am before dropping back down to normal, preceded by an ever so slight low around bedtime the previous night. Vengeance will be mine!
On Saturday of this past weekend I went to the gym, something I’ve started recently as part of a one month trial with a gym here in my neighborhood to get back in the habit of exercising regularly. I’ve been hitting the weights, trying to get my muscles to wake up and remember what they are there for, and the past couple visits I’ve added cardio back into the mix.
Cardio plays all kinds of tricks on my BG’s, usually with sneaky lows during and sometimes hours after the actity. I have had issues in the past of pushing myself too hard while exercising, especially cycling, and seeing numbers on my meter that are too low for me to continue, so the CGM really helps me and allows me to correct problems before they get out of hand. The CGM is another valuable tool in my arsenal that I use to control this diabetes beast within, and on Saturday it was working great.
The thing about cardio is that I sweat…a lot. I get into it, get my heart rate up into that aerobic calorie burn zone, and really push my limits. I enjoy the stationary bike in the gym, and I challenge myself while trying to hold a particular cadence (rate of pedaling) or speed for a certain amount of time on the bike. It’s an absolute blast for me to rock out with my iPod in my ears while conquering a ride intensity level that I’ve set into the computer of the bike. It’s not as much fun as a real ride, but for training and gym work, it keeps my attention.
So I did my bike work on Saturday, got home, and after a rest I realized that the sticky on my CGM sensor was just barely hanging on after all the sweating and training. I went ahead and removed it, as it was starting to irritate me, and since it was late I decided to take the night off before putting a new one in. That was stupidity on my part, and not the first time I’ve done it.
On Sunday morning I woke up later than ideal to get ready for a family event that I needed to get to, and I was in a rush and didn’t take the time to put a new CGM sensor in before I left the house. I went about my business at full throttle all day, and didn’t take a break to eat anything. By the time I finally got around to eating something for an early dinner, my BG was 43. I sat there cramming carbs like it was my job, and didn’t bolus enough to cover them. On top of the that, I’m trying really hard to ween myself off of carbs, so my body seems to be very hypersensitive when I do eat them, causing my BG’s to spike through the roof. By the time I got home and settled a couple of hours later, my BG was 292.
Both the low and the high could have probably been avoided, or at least better acted upon, had I taken the time to put a new CGM sensor in immediately after removing the old one. This is a challenge that I seem to continuously battle. I love it when I have the CGM, and I am a bit of an addict about keeping my BG’s within normal range. I’ve been doing SO GOOD! But once in awhile I convince myself that I need a break, and I take it, and then I regret it when my BG’s decide to go all random on me, with a stubborn high here and a severe low there, which was what happened on Sunday.
One day with CGM and I can keep my BG’s in tight control and quickly react to changes in blood sugar levels, whether they start to sneak up from an inaccurate count in carbs or drop from excessive activity.
One day without CGM and I have severe lows and highs that make me feel like I’m the world’s worst at managing diabetes, guilt trip included.
One day, I’ll learn.