Excuse Me, But What Is That Thing on Your Arm?

Have you ever had this experience, one where you are doing whatever you are doing, shopping at the grocery store or at the beach with your kids or just walking around, minding your own business and someone comes up and says excuse me but what is that thing on your arm? Now, how do you react? Do you get annoyed or offended? Or do you take the opportunity to educate the world about Type 1 Diabetes and all of our amazing gadgets.

I choose to take the opportunity to educate. I have been stopped so many times, in all of the above situations. By children, but adults, even by the elderly. I tell them it is a continuous glucose monitor. Often times I met with a blank stare so I go on to explain how it works and show them the ap on my phone and explain how awesome it is. I have also had several people come up and ask me if that is one of the glucose monitors they saw on TV, and they ask how it works. Of course I give them a huge explanation, probably providing way more detail then necessary but what can I say, I geek out over all things diabetes. I am a true believer in the CGM systems out there. As both a patient and as a user myself. (sometimes I feel like that guy from the hair club for men commercial, I am not only the founder but also a user, or whatever it is he says). I can tell you from my experience living in worlds both before and after the CGM that it has made a huge difference for me.

I know a few people who are very insecure about their diabetes, they don’t want people to know they have diabetes. I know patients and friends who feel very uncomfortable talking about it or discussing their
”equipment”. I will admit it did take me awhile back in my 20’s to embrace the pump and then the CGM. Having something attached to you allllll the time can be daunting, I will agree. When I finally did take that leap of faith and went into the world of pumps, followed by the world of CGM (much later of course), I can honestly say it has changed my life. Both give me the freedom to be a little bit more “normal”. I don’t need to hide under the table at a restaurant to poke my finger, or sneak off to the bathroom to take my shot. It gives me more opportunities to eat normally and to correct quickly when my meal guess-timations are off.

I would like to encourage all of you who have been hesitant to try the new technology out there to give it a go. Most endocrinologists now have in office CGMs they can put on you and allow you to wear for a week and then you drop it off. It’s a great way to try before you buy. See how much more empowered it can make you feel to see all of that information. If you are motivated, it can help you figure out foods that don’t work well for you. This doesn’t mean you can’t eat certain things, it just means you need to figure out what works for you. Maybe dividing your mealtime bolus or extending it is all you will need. it give you more options to experiment on your individual self.

The High Blood Sugar Alien Strikes Again

    If you ask my kids about me, they will tell you with big smiles on their faces that “my mom is so much fun, she loves to play with us and she is so nice, well, except when her sugar is high, then she can be kind of mean”. I must say that this to me is a little sad, yet it is kind of hitting the nail right on the head. When I was young and growing up, my mother used to tell everyone I was so moody. In college a few of my friends had this funny little thing they would do, they would say “swing batter batter, swing”…...referring to my sometimes ultrafast mood swings. So I have often thought this was just me. I was, as my mother used to say, just very “moody”.

    As I have studied and learned more about diabetes and talked to more patients who have type 1, I have realized something amazing. It is not just me, I am not extra moody, it is fact a great deal related to my sugars. I jokingly tell my patients they can use their diabetes or their sugars as an excuse for being grumpy or mean. Now don’t get me wrong, I am not giving us all permission to be grumpy simply because we have a medical reason to explain it. I just mean at times, a lot of the time actually, our mood can be greatly affected by our blood sugar. Sometimes, if you are all like me, you may not be able to control it. There are times when I can see and hear myself screaming and yelling at my kids and I know I am being ridiculous, and yet I can’t seem to stop myself. Why are these shoes on the floor? Why are there dishes in the sink? Why are you being so loud? Why are you on your iPad again?????? Aahhhhhhhh!!! I call this the evil alien possession phase of my diabetes, for I truly feel like some alien has taken control of me and I can see myself but the alien has control over what I am doing.

    For some of us, a low sugars brings on this cranky irritable, rage monster. You are almost possessed by an insatiable hunger and will literally stomp over anything and anyone who gets in your way. Think of being hangry, but like 10000x more than normal.  And once you find sustenance, you can not stop eating it…. Or you can become disagreeable and argumentative when someone tries to “help you”. Spitting juice back out at them, or clamping your lips together (think of Julia Roberts in Steel Magnolias) and refusing to take a sip. I had a similar experience one time when I was a kid. My brothers and I had been playing outside in the snow when mom called us in to eat lunch. Well, I apparently played too hard and passed out, and they left me outside, in the snow. So after my mom realized I had not come in and asked, she was met by 4 shrugging boys who were shoving food in their mouths, and gestured outside. She and my dad ran outside to scoop me up and bring me in. I was, needless to say, in an altered state of mental awareness. My father tried pouring juice down my throat as I spit it out and kept turning my head away. He got so mad he smacked me and yelled just drink this juice, you need it!! My mom, the calmer of the 2 told him I did not know what I was doing and she calmly got me to drink something. This was not a one time occasion. Of course I don’t have any actual recollection of these episodes, just the versions told by my family. That is one of the worst parts of this you really don’t remember and you really can’t control what you are doing or saying.

    Then there are the high sugars….. To me these are unbearable. I feel like my body is being taken over by an evil alien who hates everything and everyone. Little things drive me crazy. My kids running around and playing and being loud, (you know normal kid stuff) makes me want to kick someone. I literally can not stand anything. I hate noise, I hate clutter. I hate stuff. I hate feeling like the world is out to get me. I seriously feel like I do in fact get a little bit paranoid. I feel like people are purposefully trying to make me mad or to ruin my life. When I am high, I hate cooking. I hate cleaning. Literally I hate everything. I sometimes feel like I should run away and hide in a hole in the side of a mountain, until my sugar comes back down and the alien goes away. This alien posses me and makes me mean and angry and paranoid. Sadly, I often realize that I am unable to tolerate normal things, but can’t seem to stop the angry alien from yelling and raging against everyone. I am simply just miserable. In fact, I hate being high more than anything in the world.

One paper that I read talked a little about this. One theory is that we are upset and mad at ourselves because we were unable to keep our sugar normal and we feel like we failed, and you how they say misery loves company…..? Another theory states that cells in the brain that helps us think are in fact not getting fed (weird right considering the sugar is high and not low), this is because the sugar in the blood stream can not enter the cells where it can be used as energy, so the cell is actually not being fed. I have also read that perhaps we get angry and grumpy when high simply because we don’t feel well. So what can we do? Well, first of all understand that it is okay to feel like this. And it is probably a good idea to let your loved ones know this is how you can be and to understand it really is not you, but it is the evil alien that is being mean. Remember we all have times where the alien takes over and it is ok to give yourself a break. Be sure to apologize if you are mean (whether you mean it or not you can hurt your loved ones feelings"). What works for me is to seriously tell everyone hey I am high so I am going to my room for some quiet time, for your own safety, please do not disturb!

New Years: A Time for Change

Over the last few months I have been trying to decide which new pump and sensor I wanted to go with. My warranty expired in November and I am now free to pick something new or upgrade. I have always been a loyal Medtronic user. I have worked for them for years and trained patients how to use both the pump and the sensors. I have toured their amazing facility in California and seen the awesome display of pumps through history. When their 670g pump came out a year or so ago I was beyond excited. I wanted this pump so badly, however, my blasphemous insurance company denied my pleas and my letters of necessity to get the pump prior to the end of my warranty (despite the fact that it was a new insurance company who never paid for a pump for me). For the first time in my life Medtronic let me down. I feel like they did not fight to help me. Despite all my contacts and loyalty and work for and with them, they did not help me, so I stayed with my 630g pump and just went about my life.

This summer I was able to attend the TCOYD Conference in San Diego for the first time. I was able to talk to so many type one patients, a lot of who, are educated and very up to date on the pumps. I went with a friend of mine who has the Tandem pump and had just gotten the upgrade to start using the Dexcom G6 with the low glucose suspend. She was really excited and kept showing me her tracings, nice flat lines overnight. She said not only did it keep her from having lows, but it also seemed to impact her higher numbers. My theory on this is when we are not afraid of going low, we are more willing to be a bit more aggressive with our boluses. I was not convinced but I did talk to the Tandem reps who were out at that conference and gave them my information to reach out to me once my warranty was up. I was also able to try the omnipod, which I do like, however, it is not yet up to any form of a low glucose suspend or hybrid closed loop system yet.

While at the conference, I got a lot of mixed reviews about Medtronic. I think the issues they had with the release of their 670g and issues with sensor production and distribution and with the support (mind you I am sure they were overwhelmed with the hurricane damage), however, it left a bad feeling in a lot of patients. I still had every intention of staying with Medtronic, because to me they had always been at the forefront of diabetes world. I have defended their sensors, even work both DEXCOM and Medtronic together to prove they were equally as accurate. To me they were anyway. I still recommend Medtronic to friends and at my job I discuss all 3 pumps with my patients and if they ask I tell them what I do and do not like about each. (amazingly they all have some short-comings).

So last month, I was able to try the new Tandem X2 with the low glucose suspend and the DEXCOM G6 sensor. I was willing to try it and give them my feedback. As I wore it I was pleasantly surprised. I loved seeing how many times it auto suspended me and then turned right back on as soon as it realized I was coming back up. As I am sure most of us have experienced our insulin and food don’t always match up, I started to see with some of the foods that seem to break down slower, how the pump would keep me from going low, until the food hit. I too noticed my highs were decreasing and I am sure that in my case, it was because I was more willing to take some extra at mealtime if I was unsure of the exact carbohydrate count. My best night of all was one where it suspended me 6 times throughout the night and I woke up at 79. I mean, the whole night I was running like 80-90, it was beautiful and it never beeped once to wake me up saying I was low because the pump kept that from happening, all by itself, all while I slept like a baby. I was sad to give it back, however, I did have a couple of complaints. The first was that I couldn’t auto bolus (I often have my pump tucked into my bra if I am wearing a dress and it can be awkward to fish the pump out). With Medtronic I can just push the auto-bolus button and count the beeps til I have the number of units I need. My other issues was the case, I had such a hard time getting that battery changed and the case inhibited my clip use a bit. Luckily when I turned it back over, I was shown that both of these had an easy fix. They do in fact have auto-bolus and there is a different and newer, better case.

After a great deal of thinking and pondering and pros and cons, I thought maybe I should just wait and get a new pump after the new year, I have a few older pumps that still work so not having a warranty to me is not a huge issue. However, going back on the Medtronic after a few days made me sad and I realized, it was a new year and it was time for a new beginning. So for the first time in my 22 years of using a pump, I am changing to the Tandem T2 with Dexcom. I love the DEXCOM share ap. I love the no calibrations. And I love the low glucose suspend. I am excited to see their closed loop system, set to come out later this year and excited that the pump I already own just needs a code to use that new system. I mean how cool is that? Your pump features are upgradable from your own home (I hear there may be a fee but hopefully it is not too bad).

The Dreaded Holidays

So we are in the middle of those dreaded holidays. Yes it is a time for celebration and laughter and good times, but then there is the diabetes part of “THE HOLIDAYS”…….. (insert sad dunt dunt dunt music). You go to a party and how many people make comments, should you be eating that? I thought you had diabetes. Aren’t you not allowed to eat sugar? Then they more or less shame us and give us that look, you know the one I am talking about, the pitiful, disapproving look. I mean, it just makes me feel great, how about you?

I sometimes wish we could announce to the world that we are in fact still people. We have freedom to make our own choices. And honestly most of us, know how sweets affect us and we take appropriate action to counter act it. Surprise world, type 1 diabetics actually can have sweets here and there (just like you). Now, should we eat sugar all day every day? No, but neither should you. I can eat a cookie just like you. I can have a piece of cake like you. I can even eat a piece of candy, just like you. I know it is totally shocking.

When I was a little girl, I went to St. Christopher’s Hospital for children in Philadelphia. I was there for a week to try to learn to better manage my diabetes. I was diagnosed when I was 9 and 5 months later, I was not doing well. I revolted, I had this stupid exchange diet meal plan and I hated it. I had to eat so much to keep from going low and most of the time I was not hungry. I would feed food to the dog, dump cereal down the toilet when mom was not looking. Then I would pass out at school. My parents were overwhelmed so into Philly we went for a week. For diabetes education and management. It was here that I met my pediatric endocrinologist. I loved him, because right off the bat he told me to forget that awful exchange diet. He spent the next week teaching us how to adjust my insulin for what I ate. He told me to eat like a normal person but to count what i was eating and take the correct amount of insulin for it. It was like a whole new world was opened up to me. I could eat what my family ate. I could eat as much or as little as I wanted. Now, understand, this does not mean I ate nothing but awful stuff, but I did have some desserts here and there.

Now fast forward about 30 years and here I am. I feel like I can and do eat what I want. Of course eating too much can make me gain weight. Eating too much can upset my stomach, but everyone has these same issues. I have realized through my trials and errors of life, that what I eat does affect me. Certain foods are not my friend and i do chose to not consume them, because I do not like how they make me feel. I try very hard to not overeat and not to eat too much of the “bad” foods. I know from experience what foods are best for me and what will happen when I eat something I have trouble with. It is all a balancing act, but honestly what in life is not? So enjoy your Holidays everyone. Live a little. Give yourself some time off and allow yourself a little leeway. Maybe instead of aiming to stay under 180, allow yourself to stay under 240! And anyone who asks “are you allowed or are you supposed to eat that”, well politely reply “should YOU be eating THAT!”

"You are such a typical Type 1 patient"

Has anyone every said this to you “you are such a typical type 1 patient”? I mean what does that even mean? I have been told this by several people over the years, honestly most of them in the medical profession. My doctors or their nurses, or even my co-workers. When I asked what that means, the reply is along the lines of “you just do what you want”. Now, that could make me upset and angry, but I chose to embrace that thought. It is true, I do in fact, do what I want. I read about diabetes. I research new drugs on the market. I look into the various devices available to aid me in wrangling this never-ending disease. I trial and error my way through everything I can to try to find a way to make my life easier. Don’t get me wrong, this is not so I can be lazy. I do this so I can try to live my life as normally as possible. Those who do not have diabetes, have no idea what it is like. Even parents of kids with Type 1, will never grasp the full impact this disease has on their children. They care so much for them and hurt for them, but nobody, without type 1 will ever truly understand how it feels to be “a diabetic”. The emotional toll and the daily stress can be burdensome to say the least

I am sure you have all heard comments like, oh wow, I could never do that. I would not be able to poke my finger or take a shot. Well, guess what people, we don’t do it for fun. It is not our choice. It is called do it or we die. There really is no alternative accept death. And as they are learning more and more each day, Type 1 diabetes is not simply an absence of insulin as they once thought it was. There are so many new and varying components to this dieases. And guess what, we are all different (shocking right?) No two patients will ever be the same because no 2 people are ever the same. Our bodies work differently. Simply having type 1 diabetes does not make us all little clones of one another who need the exact same things. What works for me will probably not work for you. Parts of my treatment plan very well may but the entire thing, no way.

I used to think diabetes was a curse. I was mad at God for a long time. I followed the typical “why me” mantra we all seem to go towards when faced with adversity. But over the years, as I have grown and learned, and trialed and errored my way through 33 years of type 1 diabetes, I have found a peace, and now I feel like this is actually a blessing. Yes it sucks some days, but the bottom line is, I am proud of who I am and a large part of me is my diabetes. It has played a large part in shaping my life. We are all blessed by the new technology that has come about. It makes life easier, but it is not a cure. I challenge each and every one of you out there to “do your own thing”. You trial and error your way through til you find what works for you. I challenge you to find a way to embrace your diabetes and be thankful for it, celebrate your membership in this amazing community!

Kayaking Your Way Through Diabetes Management

Have you ever been in a kayak and seen how hard it is to go in a straight line? Sometimes it seems no matter how perfectly you paddle, you literally go all over the place. Your 1 mile straight paddle becomes a 3 mile adventure into unknown territory. You start to veer one way and you over-correct and end up going too far the other way. When you tandem kayak then you have two propellers, who lets face it are hardly ever going to be in sync.  Well, over this past summer I attended a wonderful meeting for people with Type 1 Diabetes in San Diego. I went with a friend, who also has type 1 and we had an amazing girls weekend, learning more about diabetes and talking to others who face our same battles.

While in San Diego, we visited La Jolla Beach and saw the seals and sea lions, we were so close we could actually almost touch them (although they tell you not to do this so we did not). I could have spent hours just watching them play and sleep on the rocks while the waves crashed all around them. After an hour or 2 of sea lion gazing, we were able to go on a kayak tour of the area, again to paddle alongside these adorable creatures. As we got prepared to start our journey, we decided I would be in the back since my friend had recently had shoulder surgery and was not sure how much paddling she would be up for. As we paddled along trying to stay in sync, I couldn't help but point out how type 1 diabetes is like a kayak trip. Paddle too hard on the right, you go to the left. Paddle too hard on the left, you go right. Take too much insulin, you go low, eat too much food, sugar goes up. Paddling in tandem adds a whole other level. If you can't stay in sync with your partner you go nowhere. Or you go in circles.

Just like blood sugars some days they are great and your CGM tracing is totally flat, while other days it's like hiking through the mountains because there are so many peaks and valleys. To me, diabetes is like a never ending kayaking trip. Some hours (that is right I said hours not days or weeks or months but hours), it is so easy and smooth. At other times, it is so frustrating and unbearable and you just want to scream or crawl under your sheets and sleep til you are normal again. In my life, I have found that people who do not have diabetes, will honestly never understand the struggle we go through. This disease is hard. It is impossible some days, yet, here we all are, day after day, paddling around in our kayaks going whichever way the hour steers us. It is not hopeless, but it is a never-ending adventure and with a little help from one another, I know we got this!! :-)

Diabetes for life

Thirty-three years ago today, my mother took me to the doctor’s office thinking that I had the flu. I had been home from school sick for 3 days and was not getting better. One look from our family physician and we were sent immediately to the ER. Within an hour my parents were told I had Type 1 diabetes. Something they knew nothing about, we had no family history of this disease. I was admitted to the ICU, where I was in a coma for the next 3 days. I was 9 years old and from that moment my life was changed forever. I do not remember a lot of my hospitalization, but there are bits and pieces. I remember one amazing nurse who inspired me to go into nursing when I grew up. I don’t remember her name but I remember how she made me feel, that it would all be okay. I remember I could not leave the hospital until I had given myself my own injection of insulin. The orange was easy, my stomach, however, not so much. I remember sitting there, holding the needle almost against my skin, wishing I could just bring myself to push it in, so I could go home. I remember getting cards from my 4th grade classmates, wishing me well and hoping I would come back to school soon. And I especially remember the terror of going back to school because I was now different from everyone else. Would they all treat me differently? I had no idea in my little 9 year old brain, how truly different my life would be. Fear, was the number one feeling I went home with.

Over the years, I have had so many struggles. I am thankful that I have an amazing family, who is very supportive of me. My mom was always my biggest cheerleader. Every year on December 7th, no matter where I was she would bring me a cake and a card and balloons to celebrate another year of living with diabetes. I am sure it sounds morbid to some people, I mean who celebrates a chronic illness right? It was not the celebration of the disease, but the celebration that another year had come and gone and I was still here!

Today is my 33 year diaversary (that is correct, there is now a name for a diabetes anniversary) and what can I say? I am still here, I am still alive and still going strong. I am a little older, but a lot wiser. I have grown. I have educated myself and I am standing tall. I have chosen to not let diabetes own me, instead, I chose to own it. We all have the power inside of us, to fight this battle every day. We can learn to keep getting up whenever we get knocked down (which will most likely be at least once a day). Diabetes is to me, not a curse, but a blessing. I believe that I was given this disease, so I could help others deal with their diabetes. To be like that nurse 33 years ago who let me know, during the scariest time of my life, that I could do this. Diabetes is my passion, it is my life, every second of every day, diabetes is my constant companion. I am starting this blog and this website to help other patients with Type 1 diabetes learn to live with it. To embrace your diabetes and to let it make you better, stronger and more amazing.