No Doubt– it gets hard

On my way home, I was listening to the Depeche Mode album “Sounds of the Universe.” The first song is called “In Chains” and although it’s a love song about how he’s tied to this special person, for me, it described my life with diabetes.

“I know you know what you’re doing to me / I know my hands will never be free / I know what it’s like to be / In chains.”

All right, so maybe diabetes isn’t exactly a person, but a lot of the time, it feels like one. I’ve personified it before calling it my best friend and someone I have to learn to live with. Mila Ferrer who blogs at Jaime, Mi Dulce Guerrero has called it Tía Bety, a mean aunt coming to ruin the day. Regardless of how you see it or how you deal with it, sometimes it feels like you’re living in chains.

I had gone to see my endo. The last few months haven’t exactly been the greatest in terms of diabetes management. If you’re like me, there are times when one area of your life is going awesomely that sometimes the health consciousness takes a backseat although it isn’t supposed to. Additionally, there is the occasional burnout when you literally want to just give up on trying to figure it all out.

I’m busy. Work is going well, I’ve start working out and I’m doing a whole lot of new things, but damn, the beeping, the checking, the monitoring cramps my style. Sometimes. Like being a kid: You don’t want to eat your vegetables at dinner knowing the rest of your friends are outside on the block and playing without you. I don’t always want to eat my vegetables!

There is no time like that of hearing your management has fallen to the wayside. It hit me hard. It made me tired and it made me want to cry. I eventually did on the ride home because of frustration. Exhaustion. And then, re-realized that it’s never going away. This is the joy of having a chronic illness. There are times that it’s such a part of you, you don’t think about it at all. Then there are those realization moments when it hits you: This isn’t a cold. This isn’t the flu. This is not going away. I work my tail off for something, but there is no finish line in sight– just the end of my life.

Morbid. I know. But along with the strengthening times, the wonderful times, the moments you take to learn from your mistakes, there are also the lows. The times where you feel helpless and crying is the only answer. Laughter works too, but crying… that release… it does help.

I’m moving forward, as always, without a choice, and learning about what’s going to make me feel better, be better and be the healthiest person I can. ¡Pa’ lante con la lucha!

I felt that I’ve shared things like this before. It doesn’t get any easier. However, for those who know me, know that I’m willing to talk about it and willing to support you when you need me. Just like you’ve been there for me, too.

Leave a comment

Filed under Diabetes

Every day for me is #DayofDiabetes

Building awareness for diabetes is a full-time job. It’s not just telling people about the disease, as I wish it were, it’s explaining the type you have, what you do about it and how you manage it in this whirlwind of a life. In recent weeks, I’ve received comments and questions concerning my pump, my diabetes, healthcare and questions about my insight. I’ve had deep conversations with healthcare providers, diabetes educators, health fanatics and people who want to help me control my glucose levels.

On April 5th, I had the pleasure to see our work come to fruition during the American Diabetes Association EXPO in Chicago. I sat on the executive planning committee for months previous to the big show and was happy to hear that over 13,300 people made it out to the event to learn a lot more about diabetes, resources and see that it’s possible to live a healthy life with the disease.

Since my pump warranty is up in October, I also had the opportunity to learn about the options I have as a person with Type 1 diabetes. Regardless of calling myself an advocate, I’m continuously learning to keep up the good fight of balance, education and proper management. I need my eyes to see, my ears to hear (I had NO clue diabetes affected hearing) and feet to walk!

After reading Kelly’s post about #DayofDiabetes, I felt the need to write this post (finally) and participate, because well, as the title says, EVERY DAY is a #dayofdiabetes for me!

In the never ending story of diabetes, like everyone else, I’ve heard comments regarding my life with diabetes. We should start a hashtag just for this!

See the following:

  • “You look healthy.” [In reference to me saying I have diabetes]
  • “You know that cinnamon helps with blood sugar levels, right?”
  • “Are you really wearing a pager?!”

I know, I know, we hear it all the time and this shit never gets old. In fact, I think it’s practice for me to perfect my answers to the questions. Additionally, it also helps for me to practice patience and allows me to further educate the people I speak to.

My answers to the bullet points above:

  • “I am!”
  • “Yes, but just so you know, my pancreas doesn’t work.”
  • “What did you think it was? An insulin pump?!”

My background has allowed me to dive a bit deeper when talking to others in the health space as well. For example, when talking to a representative from a clinical network, I was able to question the level of expertise being provided at their clinics. Are they just M.D.s or are they diabetic educators? Do your patients have access to an endocrinologist? How much are you actually offering the people who use your services?

I spoke with a few diabetic educators who showed me the Journey for Control maps of management.  Meant to instigate conversation about diabetes and management levels in groups, I asked if they had something like it in Spanish, if they offered this to young people with diabetes and if they had ever considered using it for parents of children with diabetes. It’s an awesome idea I wish my parents had access to when I was growing up.

I feel that I’m growing in knowledge and in many aspects of my life that only enhance my efforts for proper advocacy and education. My endocrinologist spoke at the EXPO about technology and diabetes tools in a digital world. When I caught up with him afterward, he mentioned that it was a conversation we had had that lead to this lecture. It is different when it comes from a doctor. I was live tweeting using #ChiADAExpo14 from my @Kikisbetes account.

“You made me trend,” said Dr. Philipson, who is also on Twitter. I laughed.

Leave a comment

Filed under Diabetes, Doctors, Health

This One Goes Out To The One(s) I Love

When I get scared, I get bitchy. When I get bitchy, I snap at people. When I snap at people, they don’t like me.

Usually, my fear comes from something that has to do with diabetes (like most of us PWD) and when I try to talk to non-PWD about it, I get approximately 3 different responses.

1. They don’t know how to answer and say, “I hope everything is OK” which makes me want to say, “You try living with a disease that can make you feel miserable just for eating… Anything.”

2. They say, “I don’t know how you manage! I could never.” Which makes me want to say, “You either live or die if you don’t take care of yourself. I’m pretty sure you’d be able to do it.”

3. If something happens within a few days, they say, “Well, why didn’t you … [insert what they think they know here.]” This makes me want to say, “You must think I WANT to feel this way, right? Because I did this to myself…”

Rarely do people get the answer right. But is there a right answer? This is a complicated situation to be in especially when diabetes isn’t just physical. No, it’s psychological, it’s emotional, it’s everything in one big ball of crazy. Most of the time, there is no right answer.

I think the best answer I’ve gotten to my explanation of a terrible night was, “Do you feel OK now?” That’s the most anyone can ever ask without sounding like a jerk.

I can count the times I’ve actually been afraid because of my diabetes. Afraid enough to want to talk about it.

1. Hypoglycemic moments when I drop below 40. For those of you who DON’T have diabetes, this consists of shaking, cold sweats, dizziness, imbalance and possibly your peripheral vision closing in on you– almost fainting. Fun!

2. Having my eye doctor tell me that I have bleeding in my eyes. Enough said.

3. Hearing that tingling sensation in my fingers could be “due to your diabetes.” GTFO.

4. Having my endo tell me that even though I worked really hard to keep that A1c down, it didn’t go down, and based on my numbers, it should actually be higher. FTW!

It’s not so much fear as disappointment, I think. “How could I let this happen?” is usually what I ask myself.

As a person with diabetes, we need a support system that consists of people who live with it, too. There is no way that people without diabetes could understand unless they are doctors or advisers or people with very, very empathetic hearts that have also studied the anatomy of the body.

When I complain, I really don’t know what I’m looking for. I hate to admit it, but most of the time I want to vent and talk about how hypoglycemia ruined my night’s sleep and how I don’t feel good and how I wish my head would un-cloud itself so I can think straight and I wouldn’t have to worry about getting up to pee all the time.

And today, I felt so bad for my complaints. How do people put up with me?

I want to make it easy for other people to understand who I am and what I go through, however, inside me there’s a war going on that’s trying to figure out a balance that so many other people take for granted. People are usually receptive to what I say and let me do what I need to do in order to feel better.

If my blood sugar is high, I lay down, drink a lot of water and take my insulin, usually over checking because I need to find out whether or not my cannula’s bent or if the pump isn’t working right. As much as you want to give in to technology, sometimes I doubt it.

If it’s low, I try not to panic anyone and drink juice and eat. On my own, I don’t panic, however much I feel like I’ll pass out or fall over, panicking doesn’t get anyone anywhere. It brings fear, sure. But it’s unnecessary at the moment.

So, here’s my letter…

To those whom I love and who love me:

I love you. I appreciate your concern, your kindness, your sympathy and your attempted empathy. Thank you for asking me if I have enough supplies or if anything belongs in the refrigerator. Thank you for asking me if I ate enough, took my insulin, are feeling OK or need any water. Thank you for keeping up your snack pile for me. Thank you for making sure YOU have things for me to eat, just in case. Thank you for telling me to check my blood sugar.

Thank you for asking if everything is all right when I have to see my doctor and asking about what he told me. Thank you for taking an interest in me and my issues. Thank you for supporting me and telling me that you’re proud. Thank you for your encouragement and positive words. Thank you for helping me keep this crazy effort to balance and for wanting to know how you can help. Thank you for learning about me.

However much I act as if I am always on my game, sometimes I’m not and I love that you can back me up and think for me when I’m not thinking. I appreciate it and could not ask for more.

To those whom I love and who love me, you are my guardian angels.

Gracias,

Kiki

Leave a comment

Filed under Complications, Diabetes, Health

Being Robbed of the Independent Mindset

We laugh. At least we try to laugh and have a good humor about having diabetes. I mean, it’s something that we have to live with for the rest of our lives and at times if you don’t laugh, you will do nothing but cry. It’s the truth. A lot of us use humor to get through it, but regardless of that, there are still those times that make you shout out, “Oh, shit!” at 5 a.m. because you really have no other way of expressing yourself at the moment.

LOWOne thing that I’ve seen a meme created over was the fact that you can feel relatively low (as in having hypoglycemia) but the full affects don’t hit you until you see that number on the tiny screen telling you that you’re definitely low. Shakes, sweats, stars that are a sign of a blackout all of a sudden hit you like a ton of bricks and you become a wobbly zombie headed for the refrigerator trying to get some juice in your mouth. Seeing that stupid little number always makes it worse.

There are sometimes, and I know I’m not the only one, where your body feels so weak that you want to convince yourself you’re just tired and think of even skipping trying to eat something. I know, it’s terrible. But when you have a pump or on insulin therapy and also happen to have a continuous glucose monitor, you know about the lack of sleep. Beeping, buzzing, whizzing… I’m pretty sure it talks to aliens sometimes. It doesn’t stop. That’s why if you’re on social media you see people talk about how grateful they are to have gotten a good night’s rest. It’s rare.

So last night, I went out for drinks with friends to celebrate a birthday. I was having a good time and my blood sugar was fine. I had also gone to the gym, an evil place that ruins diabetes for a lot of people.

I came home, had a little snack before going to bed and then the beeping started. You know, that decreasing three-tone beep that lets you know it’s coming. “Predicted Low” says my pump and I groan and roll over. It’s at 70. If you have a CGMS, you know that sometimes it can be off. Maybe mine is off I thought. A few minutes later, that other beep… the one that tells you you’re low. I ignore it. A few minutes later, there it is again. My reading says something like 60 but as I lay with my eyes wide open, deciding what I have to drink or eat, I realize that it’s dropping more. At this point, I’ve already suspended the pump. Even though I do that, I keep dropping. It’s really a pain that started since I started going to the gym again. It drops at night even more on the days I don’t go, which is how I know my workouts are really working. Weird, I know, but that’s how I feel about it.

I finally get up after having a mini dream about drinking the last of the orange juice in my fridge. I get to my meter and check myself. “Holy shit!” I said without even realizing it. The number: 26. As I stumbled (from shock, I think) to the fridge, I thought, should I even be awake right now? Conscious? I mean, anything below 70 is already considered hypoglycemia and I was way below that.

I chugged the orange juice so fast that I got brain freeze. At 5 a.m. In the middle of winter. My dumbass gets brain freeze. I look around for more things to eat. I had just gone grocery shopping and I got healthy food. It’s times like these that I get upset at myself for trying to be so healthy. What is asparagus going to do for hypoglycemia?! I found my stash of peanut butter and even better my stash of Nutella. Hello Nutella and peanut butter sandwich at 5 a.m. Best breakfast ever. After the juice, drank some milk and there I went, off to bed. I checked one more time and I was at 49. Still incredibly low, however it was going up.

I tell you, for having diabetes, it’s rough. And it’s times like these that rob me of an independent mindset. I always tell myself that I can live alone and that I’ll be fine, but there’s a fear that sets in during those early morning hours that make me think, “What if no one looks for me tomorrow and I’m passed out on the floor?” The only thing I could think after all that was, “Thank God I woke up.” When the diabetic educator asked me if I lived with someone and I said no, she said, “Well, when you do, we’ll teach him how to give you a glucagon shot.” How romantic.

“Hey sweetie, as a sign of our love for each other, I want you to learn how to shoot me up and save my life.” I guess it can be, just not the way I envisioned it.

Leave a comment

Filed under Diabetes, Food, Health

Latinos Face the Facts– and the Worries

The last show that we did for DSMA en Vivo was focused on diabetes and the worry of the every day Latino individual about developing the disorder. It was quite an interesting conversation based on a poll done by the Harvard School of Public Health. The summary states the following:

A new poll was released recently on the views of Latinos in America about their health and health care, communities, financial situation, and discrimination in their lives.

It’s a great look into the lives of those who are growing the most rapidly in the country, taking into consideration what they see and how they see it, especially when it comes to health– a topic that is among the most taboo in the cultural community. There are a few things to consider when looking at the community.

1. If you go back to a time when folks were in their countries of origin, medicines were used to cure illness of all types in a very natural way. Teas, oils, prayers, concoctions made from the earth were given to the sick person to hopefully cure them of their illness and situation. Many Latinos still do this, in a non-trusting-of-phrama-company kind of way.

2. The idea of preventative medicine didn’t normally come up, especially because people lead relatively healthy lives to a lot of people in the United States today. It’s not to say that there are no healthy options, however, many Latinos fall into a category of underprivileged or living in poverty, limiting everything from education to food options dependent upon where they live.

3. Although there was hardly an idea of preventative medicine, there were and still are MANY preventative actions in the Latino culture. Everything from drying your wet hair before going outside into the cold to wearing shoes in the house, we are raised with cultural, health related nuances that we may overlook as time goes by.

OK, now back to the poll.

When speaking about it, we pointed out that nearly one in five or 19 percent of Latinos said that diabetes is the biggest health problem facing their families among both immigrant and non-immigrant Latinos. It used to be cancer. Diabetes is becoming a real issue that people are seeing all the time in not only relatives and extended family, but honing in on themselves due to issues such as heredity, lifestyle and diet. We now know that Latinos are afraid of developing it. This is good.

These findings were not surprising, however. What we found to be extremely surprising and morbid was that over half or 52 percent of Latinos polled are not confident that they would have enough money or health insurance to pay for a major illness. And if you have diabetes, you know, it’s a price to pay. I complain about it all the time myself.

This alone should be enough of an incentive for people to shape up and get on top of their health, especially if they’re prone to it. The financial burden that this could cost someone is hefty, especially if you’re new to the diabetes game. I say this because I recently paid $50 for a box of strips. Yes, that’s right– a box of 100 strips. That’s insane. I then asked my doctor to write me a prescription for another type (because you know we all have about seven different glucose meters) and I only had to pay $50 for 500 strips. That sounds a bit better.

After 20 years, you learn how to work it because you know you have options. There are always options, you just have to know what they are. *DING!* Education.

Moving on. According to this poll, which I, again, didn’t find too surprising was that many questioned didn’t think their diet was any worse here in the United States. About four in 10 or 38 percent of immigrants said that their diet is healthier in the U.S. Really? And about the same amount see their diet equally as healthy.

Here’s the blunt truth about that. If you don’t know what healthy really is, how are you to know what healthy isn’t? I mean, many people that I’ve seen who have developed diabetes don’t know that corn muffins have carbohydrates in them or that refried beans are bad for you. REFRIED being the key word here. The other blunt truth is that, if diet is the issue, it’s your fault because you decide what goes into your mouth and what stays out of it, right?

We know that it’s not just about the lifestyle, that it is, in fact, hereditary as well BUT your choices impact the development of it within your system. You could be genetically disposed to having diabetes in your system, but there is a possibility that it may never surface because of your lifestyle choices.

Latinos don’t like to be blamed for things, I’ve realized. Especially if it was their choices that got them there. There has to be some other reason why their diabetes developed, there has to be some other cure besides that of eating right and maintaining a healthy lifestyle. Put DOWN the tamal! Stop drinking the COKE! Add some more color to your food and stop FRYING EVERYTHING!

It all starts with the individual and the push for a proper education regarding health issues. That’s it.

Are there societal issues that keep people from obtaining the proper options? YES.

Is there an economic burden on Latinos that affects their abilities to make good choices? YES.

But is there a resource out there to help? YES!!!!

Consequently, because of a lack of education and support for those with diabetes will lead to higher deaths due to diabetes complications especially among the hardest hit communities — Latino and Black. We need to do something about it.

Unfortunately, yet fortunately, a friend of mine just told me that her husband was diagnosed with Type 2. His mother was going through some complications as well and her fear was him developing it (which is what this poll is all about!). Well, it happened. She said she was sad and I couldn’t do anything but say, “There is no time to be sad. You have to be proactive.”

She’s going to have to learn and help educate him as well on the journey. Being on top of his health is going to help in many different ways, but the first step is getting out of the “sad” mindset and getting into the “I’m going to control this” mindset. I offered to help both of them.

I hope she calls me.

Leave a comment

Filed under Diabetes

As Long As I’m Alive…

There is not one day that goes by where I’m not affected by this internal bully of a disease. More like an annoying, know-it-all friend who won’t shut up. It feels like no matter what you say, you’ll never be right, even if you really, truly thought you were. Not to mention that they’re always challenging your knowledge and throw a wrench in your plans, and the next thing you know, you feel like you’ve been through an emotional roller coaster and you don’t know what tomorrow will bring.

It’s almost like a bad relationship. Neglect leads to fights, which lead to emotional bouts in your head, leading you to cry tears of frustration, feeling like you don’t know what you can do to fix it and eventually dreading the future with your partner. You get tired and burn out. There is no relief, there is no consoling or anyone to tell you it’s going to be all right, because honestly, you don’t even know it’s going to be all right.

Don’t forget the good days. Those are a double-edged sword. You celebrate the wonderful communication, the fact that it all worked out for the day, and you hope that in 24-48 hours, you feel the same way: happy, warm and balanced.

The internal conversation is messy. If anyone else heard it, they’d think you were nuts. You blame yourself for things that sometimes are truly out of your control. You try to think ahead to guess on what the outcome will be in four hours only to be incredibly off kilter with what your “opponent” is trying to do to you. Yes, it feels like it’s out to get you and throw you off on purpose. “We’re on the same team!” you scream at yourself. “Why is this so hard?”

Don’t get me wrong. Diabetes is sometimes my best friend and we get along. Other times, I bitch about it like there’s no tomorrow and yet other times, I want to punch it in the gut and leave it agonizing over what it’s done to me. Fortunately, for me and diabetes, it is not a person who I can harm.

When you feel out of control, sadly, shame comes upon you. I’m telling you, the more I think about it, having a chronic disease is really like having a bad partner. At times you don’t want to even talk about it for fear of what other people are going to say. “Why do you do that to yourself?” “Why isn’t it working?” “Maybe you just have to take a step back and breathe.” That’s what I think to tell my friends when they’re having relationship issues and it applies to me as well. Ridiculous, huh?

However, this comparison also goes to show you just how emotional and psychological diabetes is on someone. Though it might not seem that bad or you think it’s linear and systematic, it’s not. Every day it’s something new. Whether it’s administrative like ordering prescriptions, verifying insurance, having organizations say they don’t want to cover you or worrying about what you have to pay out-of-pocket to miscalculating carbohydrates, eating too much fruit, having your tubing kink, running out of strips or explaining what the beeper on my hip is for, I deal with some aspect of my diabetes every day.

I’m not complaining. I’m really not. But between letting it out and trying to stay balanced on my own, I really want a break. Other times though, when I’m feeling low and lonely, I’ll settle for a hug.

4 Comments

Filed under Diabetes, Health, Stories

The Challenge for 2014

Today marks the end of the year. The last day of an amazing 2013, whether I enjoyed every minute of it or not. This year showed me the power of self, the ability to bring goodness with positive thoughts and the ability to find self-worth and love in chaotic situations.

Above all else, I learned that absorbing every ounce of observations and pieces of situations helped me move forward and that I did learn a lot, even when I thought there was nothing left to learn.

LifeAs much as I don’t like resolutions, those that I’ve made in past years, I’ve kept. However, today I write a challenge for 2014. Though, it’s not for me, it’s for you. After all I’ve seen and those who I’ve talked to, I’ve found a pattern. Additionally, I credit the inspiration for this to my friends who are going through their #Reinvention2014 and who reminded me to love myself regardless if I feel the need to and regardless of loving so many people around me. So here it goes. Are you ready?

I challenge you to learn more about your body. Learn more about your own health; spiritually, mentally, physically and holistically. There are many people I came across this last year who didn’t do that and paid the consequences for it. And I mean in every way. Down to the people they were surrounding themselves with, to the stress that work caused them. Learn what’s good for you and how your body has a ripple effect; what affects your mind will affect your body and vice versa. Don’t take your health for granted and get to know yourself inside and out.

I challenge you to challenge your healthcare professionals. We all go to the doctor, but I’m telling you from experience, you know your body the best. When they tell you to do something, ask why. When they prescribe medications, ask what they do and what else they work for and why they chose to give you THAT one. If not, turn to the internet. Find out for yourself, then ask your pharmacist. You know, that’s what they’re there for. Use your resources.

This one may be self serving but hear me out. I challenge you to talk to me. Ask me questions about my health. I’ve had a tumultuous history with my body but I’m not afraid to talk about it. From nutrition to how the body functions, I have an idea and if I don’t, I know where to look and find out. I don’t give pity parties; I don’t believe in them, but I will help you find answers. Your body is the greatest tool you’ll ever own fully. You have every right to use it and the last thing I want to see is someone suffer from a preventative situation.

I challenge you to learn about diabetes. Seriously. Its an epidemic taking over in many ways and you probably know one or two people who have it, not including me. Type 1, type 2, learn about both. Learn what it does and why it can harm you. Ask me questions about it. You have to know what’s out there and how you can prevent it. You also have to care for those around you. You can be of service to those with diabetes more than you know. I’ve written about it before and I will continue to do so in the years to come. Communities, whether you are a member of it or an ally of it, help each other to grow, learn and heal. Be a part.

Happy New Year’s Eve. Take a minute to think about how you’ll improve in 2014 and take the challenge. It won’t hurt you and its not a diet. I say do it!

1 Comment

Filed under Diabetes, Doctors, Health

Letting It Out

These holidays have been hard on me. They’re always hard on me though, I feel. A few weeks ago, I took the CGMS out and didn’t put it back on until last night. I couldn’t stand the beeping anymore or the fact that it wasn’t accurate the way I needed it to be. I got tired; burnt out. You know how it goes.

However, last night was different. Last night I talked about the burn out. I’ve talked about it here before but not as in depth as I talked about it last night. I guess I never felt the need to because it always felt like a complaint. I don’t like complaining as much as I like doing something to fix it. But last night, it all came out. I talked about it to a point that it almost made me cry.

I talked about the ups and downs, the roller coasters, the fact that sometimes you do everything right even though the number comes out wrong and it’s a consistent game you play with your body. It’s almost like you try to second guess what your body is doing and yet, you can’t get ahead of the game– and it’s exhausting. And you want to give up. But you don’t have the choice to give up.

I don’t have the choice to give up.

Instead you do enough to get by, until you can put your pilas in (batteries in Spanish) and get yourself revved up and ready to take on the world again, making diabetes something you’re not tired of but learning to live with… all over again.

“It must be hard,” said the voice in the dark room. “That’s why people don’t even bother to check.”

Regardless of who I try and make understand, it happens rarely. But the more I talk about it, the more I feel like someone will know what I go through. The things that I never talk about because I need to be positive and healthy and normal and good to myself. The upkeep, the management, the constant day-to-day of living with this issue and pretending that you are the pancreas that has malfunctioned on you– it’s another job.

Managing my diabetes makes my actual job look like a piece of cake.

Sometimes you have to let it out. Sometimes you have to let it out to people who don’t have diabetes because talking to those who manage well and have A1cs as low as normal people can get intimidating. Sometimes those folks are just as intimidating as the A1c test itself; as the endo who tells you you can do better. Sometimes, you need someone that doesn’t understand so that you can really tell them how it is. And you almost cry.

Because sometimes, that’s the only way to cope.

Leave a comment

Filed under Complications, Diabetes, Health

Precaution: Diabetes in the Mainstream

A couple of days ago, I caught the episode of “Two Broke Girls” after hearing that there was a “diabetic” on the show. Y’all know how about I feel about that word, and if you don’t, read about it here. Anyway, when I heard that there was a PWD on the show, I had to watch it. The first thing I thought was, “I can’t wait to spot all the errors they’re about to commit!” Especially because, well, that’s what usually happens. We read, see, hear something that’s totally wrong, inconsistent and sometimes unsettling.

TwoBrokeGirlsIn the episode, Max decides to go to pastry school and meets Dick, I think his name was. They make jokes about their instructor and at one point when they get kicked out of the class, they start talking and he shows his fanny pack with syringes and insulin. They make a joke about him being “diabetic” and a pastry chef. He ends up liking Max and goes to the extreme of not taking his insulin so that he goes into… and this is where it gets weird.

While Max is talking to her roommate Caroline, Dick falls over (why? Because apparently he’s going into shock? Or just acting it out) and the head Chef asks if anyone knows how to administer a shot. Max proceeds to just pull out a syringe and shoot him up. After she’s done, he stands up like nothing happened, claiming that he didn’t take his insulin so that Max could be his partner (since she knows how to give shots). What a guy! He must REALLY like her.

OK, what do we know about diabetes? First of all, we know that high blood sugar creeps up on you and as a person with Type 1 diabetes, you’ll feel that and have symptoms. Secondly, bouncing back from a high blood sugar takes at least a half hour because you feel crappy and you need time for the insulin to be absorbed in your body. And lastly, how did she know how much insulin to administer? We should also make note that when your blood sugars are that high, you want to test your blood sugar to figure out just how much insulin to give yourself. The last thing you want to do is “roller-coaster” your body and drop immensely.

Although diabetes is popping up in sitcoms and other general market areas that a wider audience can see, the information pushed out should be correct. Maybe he was pulling everyone’s leg and it was a joke, but it should never be treated as such. Administering insulin is such a serious thing that it came up in a court case in California as recent as August, ruling that schools can administer insulin without a nurse.

I’m glad that people are talking about it and that it’s casual enough to stick it in a sitcom; especially Type 1 diabetes. People should talk about it more, but you also have to know that what you see isn’t always the truth.

2 Comments

Filed under Diabetes, Health, Insulin, Stories

A Glass Of Water After Loads Of Mud

Yesterday I had the opportunity to be consulted by one of the best endocrinologists in the nation and the world. You know how that feels? It feels like a cup of hot chocolate during a blizzard. Or as my friend once put it, “A glass of water tastes good after trying to drink mugs of mud.” It feels something like that.

When it comes to having the opportunity to see and be checked out in a leading research hospital, recognized by the National Institutes of Health as one of seven Diabetes Research and Training Centers in the United States, I’ve realized that I’ve come a long way in my diabetes care. If you’ve followed the blog, you’ll know that just last year I didn’t have any insurance whatsoever and now, now I was sitting in front of a scientific expert when it came to something I’ve been living with since I was 7 years old. I was thankful, grateful and thirsty for as much information as I could get my ears on at the moment.

Dr. Louis Philipson is the director of the Kolver Center at the University of Chicago. This experience was my glass of water. Here’s what his bio says about him:

For more than 25 years, Dr. Philipson has tirelessly explored the biophysical, molecular and genetic aspects of insulin secretion, and the genetics of diabetes. He and his colleagues discovered rare insulin gene mutations that produce beta cell ER stress and, in turn, cause neonatal diabetes.

In addition, Dr. Philipson and his colleagues are among the nation’s leading experts on monogenic diabetes, following more than 100 patients diagnosed with neonatal diabetes and many others with maturity onset diabetes of the young (MODY) type diabetes. He also serves as co-director of the Human Islet Transplantation project at the University of Chicago.

I mean, not just a few months ago I had a nurse telling me that I should not check myself so much because I only had one test strip Slide1to work with a day! Now I was learning from one of the best. I could have talked to him for hours. I’m a nerd for Diabetes. I want to know about every aspect of it and write about it. I want to tell the diabetes story and share what I know.

The body is miraculous and the reason as for why mine has broken down, or just stopped working is beyond me, but because it affects over 350 million people in the world and not just ME, I want to know what and how and what part I play in a cure.

The idea of experiments, trying new things and ultimately sharing findings is exciting to me. And let’s not even begin to talk about technology. If you are a person with diabetes or are close to someone who is, you are quite possibly a tech geek in the space that has increased its following 10-fold over the past few years due to the leaps in technological advancements when it comes to checking blood sugar levels, administering insulin and even gauging all of that information into devices that make it easy for people to analyze.

I am NOT a numbers person, but when it comes to seeing all of the information my pump gathers, I freak and flip and try to figure out how to get those numbers down and where they’re supposed to be. Would I like to do that for fun for something else? No. But show me, tell me about diabetes glucose numbers and watch me want to fix it.

But it all starts with self management. There was a sign in the examination room that basically stated the questions that people should ask when it came to seeing the doctor. I learned this a long time ago and since then I’ve opened up to my doctors and tell them everything that I know, all that I’ve done and I asked questions.

Before seeing Dr. Philipson, I saw Susan, the diabetic educator, and I told her my entire life story. I mentioned all the doctors I’ve seen, (it’s a total of six now) the fact that I blog, volunteer, do a radio show and am actively trying to kill the stigma that exists out there. I explained my lifestyle, the things I’ve tried, what I’m bad at (mostly just checking blood sugar when I have my CGMS in and at using the bolus wizard) along with what I know how to do.

I was referred to as an old pro. I just wish I was getting paid for the management that I go through! I told them about twitter chats for DSMA and how I feel when I share the information that I come across and know.

It’s important that the doctors know me as much as I know them. And not just the doctors, but the team. We know that diabetes affects every part of your body. We also know that everything we do, down to stress levels, affect our blood sugars and hence the severity of diabetes (whichever type you have). If I can walk in to the doctor and talk about stress levels and learn more in-depth as to how it all affects me, I’m going to be a happy camper and they’re going to understand what I’m going through.

In the end, we all search for understanding and acceptance. We, as PWDs, are not by-the-book experiences. You can’t figure us out with a formula. It’s hard for even significant others to understand what you’re going though and surprisingly  there are still many of us who don’t know anyone IN PERSON with the type of diabetes we have. We are plagued with thinking like an organ and we won’t be taken down because of such a situation.

Hard to get, right? But that’s why, when you find someone who understands and can explain and push you in the right direction and be a cheerleader and tell you how to help yourself WHILE at the same time looking for advancements in how to make your situation less burdensome, it’s almost a miracle.

This blog is just one part of the whole. I want to wait for test results from the six tubes of blood they took out of me to get into the nitty, gritty scientific stuff. A lot of what Dr. Philipson told me had to do with other patients, studies and hypothetical situations of various forms of diabetes. It’s also cool that he explained the “Dirt Theory” about Type 1 diabetes in children, that Scandinavia has the highest rate of Type 1 diabetes and that genealogical-ly speaking, you have to consider so much when talking about hereditary diabetes among Latinos because of all the places we come from! I mean, you can’t expect too much. It was only the first appointment!

So, stay tuned for the next one friends and thanks for reading.

Leave a comment

Filed under Diabetes, Doctors, Health