Giving (a little) hope for a cure…

Exciting news that will encourage stem cell research in the USA!

Let’s hope that the possibility of government funding for stem cell research will bring us steps closer to a cure…

Wouldn’t it be GREAT “to spur insulin production and spare a child from a lifetime of needles…” (and to spare adults too!!).

I’m realistic and not expecting a sudden cure, but this seems to be a step in the right direction!

 

Thank you Dr. Banting and Best!!

For those of us who are dependent on insulin, we can thank our lives to Dr. Frederick Banting and Charles Best who discovered insulin in 1921. Their discovery truly changed the future of many people living with diabetes (more specifically, gave them a future). There is a good summary of the discovery of insulin here.

When I was diagnosed with diabetes, I never really thought much about a cure because (thanks to Dr. Banting et al) I had insulin. I even wondered why people were fighting so hard for a cure for type 1 diabetes when we can survive “just fine” on insulin. I have since learned that insulin is not a cure. It is not a cure because (as anyone who depends on injected insulin can tell you) you cannot control your blood sugar at all times. But also, it is not a cure because for people living with type 1 diabetes we are missing more than just insulin. When our bodies stopped producing insulin, they also stopped producing c-peptide and amylin, which have vital roles in protecting our organs and nerves. Check out this post at Allie’s Voice to learn more.

Of course, I don’t want to underestimate the importance of the discovery of insulin, but I (now) realize that INSULIN IS NOT A CURE.

It really touched me when I read that Dr. Banting completely agrees. He discovered insulin and what he discovered meant that “The death sentence for diabetes sufferers around the world had finally been lifted.” (from this site). The discovery of insulin meant that people with type 1 diabetes would live, but it was not a cure. At the house in London, Ontario, where this incredible man first came up with the idea to inject insulin, there is a flame that will burn until there is a cure for type 1 diabetes. Read more at this website:

While the Flame of Hope is a symbol of hope, it is also a reminder that insulin is only a control for diabetes, not a cure. Only when that cure is at last found, will the Flame of Hope be extinguished.

The man who contributed so much in enabling people with type 1 diabetes to live knew that there was so much further to go to cure type 1 diabetes. 87 years after the discovery of insulin, that flame still burns, hoping for a cure. I wonder how much longer it will have to burn for…

 

World Diabetes Day: Lighting Budapest up in blue!

More reflections on World Diabetes Day to come soon, but I leave you with a few images from my corner of the world– Budapest, Hungary (I guess that this is the first time that I mention where I live on this blog!!). For WORLD Diabetes Day, the Liberty Lady who looks over the Danube decided to get all dressed up in blue 🙂

We were very impressed by all the businesses that decided to honor World Diabetes Day by “lighting up” in blue as well… a used clothes store, good ol’ Samsonite, and a tourist exchange office (check out those exchange rates)!

A used clothes store decides to light up in blue on WDD!

Samsonite decides to light up in blue!

Foreign currency exchange office decides to light up in blue!

 

Sweating the small stuff…

Can you see the kink at the end of this cannula?

Yeah, me neither. It’s hardly detectable, but it is there. The kink in the last millimeter of this infusion set really put a kink in my day.

Last week, I started on the Minimed Paradigm 722 after four years on the Cozmo (long story short: I love my Cozmo, but it’s not available where I currently live outside of the USA, so I had to switch pump brands. For a thorough review and ideas on how to Cozmofy a Minimed pump, check back next week!).

A new pump gave me an excuse to try out some new infusion sets. I have been faithful to the long Comfort (same as Silhouette), manually inserted. At first, I used it out of ignorance (no one ever told me that there was more than one type of infusion set). Then because I am a creature of habit.

As it turns out, I have a pretty significant amount of scar tissue (OK, really how is an insulin pumper to know how much scare tissue is “normal”– yes I’m covered is polka dots, but I thought we all were). My doctor and pump rep told me it was time to try a new infusion set that I would wear on my stomach (I hated wearing Comfort/Silhouettes on my stomach). So I was sent home with a bunch of 9mm Quick Sets.

Being a creature of habit, I was skeptical. Rightfully so.

Even using that fancy device (Serter), I seem to keep getting bent cannulas. The bend is barely visible to the naked eye, but my blood sugars know when it’s there. Last week’s basal testing revealed that my morning basals are spot on (can’t say the same for the rest of the day) and I meticulously counted my carbs  or breakfast and bolused 30 minutes before eating. So I was pretty disappointed by the after breakfast high blood sugar that stubbornly refused to come down. After a couple hours of troubleshooting, I removed the infusion set and can only figure that THAT was the problem.

How many people can say that their morning was ruined by a 1mm bend at the end of a 9mm plastic tube? I can. Just a reminder that little things make a BIG difference!

 

Forgetfulness + diabetes = ???

It’s been a busy month. Somehow once I get past a certain point of “overwhelmed”, I become very forgetful. In the last week, I have been SO forgetful: forgetting to do things for work, forgetting where I need to be, forgetting what I was thinking about a minute ago. So I keep lists, set reminders, and try to deal with the forgetfulness.

But it doesn’t make for easy blood sugar management. Here’s what happened tonight.

I tested in the evening before bed. My blood sugar was 55 mg/dl. I decided that the treatment for this low blood sugar should include juice (6g) and a chocolate bar (14g). I drank a shot glass of juice (yes, I treat my lows using a shot glass to measure my juice).

[Here’s the part where I don’t remember what happened.]

About 20 minutes later, I think “did I eat that that chocolate bar”? I have absolutely no idea. Maybe I did. Maybe I didn’t. Sounds like no big deal– unless you realize that this is the difference between good blood sugar through the night or facing a nighttime low.

So, accepting my forgetfulness for what it is (meanwhile hating it), I search for clues. First stop, ask the husband: did he SEE me eating a chocolate bar? (No help, but it’s not in the husband job description to make a mental note of everything that enters wife’s mouth.) Second stop, trash can: is there a chocolate bar wrapper on the top? YES!! So I did eat the chocolate bar (or is that the wrapper from one I ate after lunch? Did I eat one after lunch?)…

I figure that I am 75% sure that I ate the chocolate bar that will prevent the nighttime low. To be safe, I ate a 6g chocolate bar, figuring that it’s better to risk being a little high in the morning.

Two hours after falling asleep, I awake in a cold sweat and the meter confirms the low at 48 mg/dl. So I sit here writing to you to tell you that I solved the mystery, I did NOT eat that chocolate bar before bed and to let you know that forgetfulness and diabetes are not a good combination.

After another shot glass of juice and a chocolate bar (for REAL this time), I’m heading back to bed…

 

Lopsided living

Being on an insulin pump means wearing an infusion set (small plastic catheter that delivers insulin into fat), I wear my infusion set either on the outside of my upper thigh or just below the belt on my rear end. This week, I just observed how aware I am of where my infusion set is, completely on a subconscious level.

This week is a “left-sided” week. My infusion set is on my right thigh. This means that I sleep on my left side, carry my bags and purses on my left side, … Next week will be a “right-sided” week. When my infusion set switches side, I pretty much automatically switch everything else. It hit me this week that this is something that I don’t think much about– it’s almost automatic. When I pack up my books for work, I pick up my bag and somehow it’s on the correct side.

Now I have another good reason for site rotation. If I don’t I will lead a really lopsided life!

 

TuDiabetes: A home for people touched by diabetes

 

Pump vacation: Too good to be true?

I took a vacation to the beach a couple weeks ago. I decided to disconnect the pump for the week, just because I wanted to. I was expecting that I would come home and rave about how much I missed my pump and how thankful I am for it. Surprisingly, I waited a week thinking about what to write because I have mixed feelings.

Disclaimer: I love my pump. Really I do. I’m not ready to give it up. Take this whole post with a grain of salt.

Other disclaimer: I had really bad blood sugars this week. They influenced the tone of this post and they are sorry.

So during the vacation, I used a split dose of Lantus for basal insulin with Humalog (as usual). I ate at least one ice cream cone per day, we ate out some, and I left my food scale at home. So I was expecting wild swings in my blood sugar with 8-10 injections per day correcting all those crazy swings. BUT I woke up between 80-100 mg/dl and most of the times that I checked, my blood sugars were near perfect. I was doing everything wrong, but the numbers didn’t show it.

OK, I was definitely more active than usual, but I wasn’t experiencing frequent lows the way I usually would. I was constantly amazed by my great blood sugars.

I chalked it up to a GREAT vacation and reconnected to my pump on the last night. Right when we got home, I felt a cold coming on… and I’ve been sick most of the week. My blood sugars were everywhere- really horrible. Highs that linger and just refuse to come down. It seemed that NOTHING was going right.

So it’s hard for me to write about how I love my pump and how much I missed it during the vacation. BUT when I am thinking more rationally, I realize that there are reasons that I love the pump and reasons that I have better control with the pump. I will list them here, mostly to reassure myself that all the extra work with the pump is worth it. Feel free to add to my list (or disagree with it!):

• I correct EVERY blood sugar, even when they are just slightly high. It is hard to correct just slightly high blood sugars with injections.
• I exercise more with less lows because i can turn my basal rate down to 50% one hour before exercising– this is amazing!
• I can live with more flexibility, because if I ate, checked my sugar, then want to eat more, my pump can process all that data telling me what to do without going high or low (it remembers how much insulin is active in my body– something that is hard to keep track of unless you write down your every move).
• It’s easier for me to give boluses early. You should give your bolus 15-20 minutes before eating. I can often do this while walking to get lunch, while cooking, etc. I think that with injections I would often not bother to do this.
• I have different basal needs through the day. In fact, most of us do. So the pump can give me more basal insulin in the late evening than in the early afternoon. You can replicate this by splitting your long- acting insulin dose, but with much less precision.
• With the pump, if I have good blood sugars and do not eat or bolus, they will stay good all day. The basal really works as a background insulin. When I used injections, I could not go 12 hours with eating, which means sometimes I was feeding my long acting insulin.

 

Overcoming my fear of the Snickers bar…

I love Snickers, always have, probably always will.

After my diagnosis with diabetes, no one told me: “Don’t eat Snickers”, but it kind of seemed implied. When the doctors, diabetes educators, and books talked about carb counting, they always talked about whole wheat bread, fruit, and other healthy options. So I figured that my love for Snickers would need to be suppressed FOREVER…

… but I secretly wondered, what would happen to me if I DID eat a Snickers bar???

Everything was so new too me, I even thought that maybe if I ate a Snickers, I would just die. So I didn’t eat them.

Then I heard about a JDRF support group in my area. It was mostly families with younger children, but I was just so excited about meeting other real live people who live with diabetes!! I was asked to bring a snack to share. So I searched for a LOW CARB treat to bring. I decided on pudding drops (sugarfree pudding, made slightly thicker than usual, put on wax paper in the freezer). Carb count about 1g per drop.

I show up to the meeting and put my pudding drops on the table next to the apple pie, cake, ice cream, … and I wonder what all those things were doing there. Perhaps it was for the non-D parents??? But I noticed that the parents had written out the carb counts carefully next to each food.

So I watched. The kids went up to the table, picked out WHATEVER they wanted and bolused accordingly. I was shocked.

I had to ask. Was I allowed to eat this stuff?

The parents admitted that it was the exception rather than the rule, but sure if I counted carbs accurately and bolused properly I could even eat desserts!! BUT I should test and make sure my blood sugar did not spike too high afterwards.

So a Snickers bar wouldn’t kill me. I didn’t need to be afraid.

After almost a year with no Snickers, I bought one the next day, bolused and savored every bite. Wow, it tasted good.

Then I did the same the next day, and the day after that, and… I didn’t die.

That was the beginning of my “eat whatever I want and bolus and correct” phase. This was NOT the best form of diabetes control. I DO NOT RECOMMEND IT. But it was a step in the journey and part of getting to where I am now. During this phase, my saving grace was that I checked my blood sugar often and corrected the inevitable highs.

This phase gave less than perfect A1c’s and also caused huge swings in my blood sugar. It wasn’t until I gave it up recently that I realized how tiring that lifestyle was physically. Therefore I’m sure that it wasn’t good for me.

The upside is that I learned how to carb count well and that serves me well now when I want to integrate treats into my diet in MODERATION (i.e. Fun Size Snickers).

 

Dear Diabetes- a letter to my diabetes on our 5th anniversary

Dear Diabetes,

So today is the 5 year mark in our journey together. We sure have had some ups and downs.

On our special day today, I wanted to treat you really well. So I woke up with a great fasting blood sugar and ate an almost no carb breakfast (though it wasn’t all that tasty)– I just wanted to make sure that we would both be in the mood to celebrate. Then you decided to pull one of your usual tricks: the unexplainable high that just won’t come down. I’ve seen it before, but why today???

Recently, I started to feel that I can 100% accept and control you, that life with you is not so bad… and maybe it’s not.

But there are days where I do everything that I can to treat you right and you don’t seem to care– you decide that the insulin you got just wasn’t enough (despite accurate basal rates, carb ratios, corrections factors, and carb counting that I determined based on your earlier complaints). And I start to wonder if all the effort is worth it…

So we decided to go out to dinner tonight to celebrate our five years of life together. I decided that I would celebrate with a high carb meal and some genuine “carb guessing” and ad hoc bolusing. And I did.

How did you thank me? With a blood sugar of 101 🙂 You knew just what I needed to end the anniversary right. Thank you for giving me the “night off” and allowing me to enjoy a nice meal out while you stayed on your BEST behavior.

I wanted to write this letter on a purely positive note about the struggles that we overcame and how we are ready for whatever may come. But today didn’t feel that way. No, today was more real. Today was a day to recognize that our relationship for the past five years has been full of ups and downs, just like today was up and down. And the coming days, weeks, months, and years will be full of ups and downs.

But the point is that we keep on keeping on because that’s what we do.

Sometimes you don’t cooperate with me; sometimes I don’t take care of you. But then there’s always a new day, a new inspiration. So far there have been just enough– I hope that there will continue to always be enough new days, new inspirations, and new reasons to keep on…

Yours,

Kristin