Tag Archives: type 1 diabetes

Why going to the endo is like math class

D E B U T S I N G L ERemember when you used to take tests or quizzes in math class and the teacher would tell you that “you have to show your work or else you’ll only receive half the credit”? First of all, I should be allowed to do math in my head, even though I get it, they wanted to cut the cheating out. Secondly, I hated getting the answer right but the “steps in getting to the answer” wrong. Isn’t there more than one way?

Yesterday, I had a visit with my endocrinologist who I hadn’t seen in a year. This was due to being laid off my job a year ago and finding health insurance again. Going to see a world-renowned endo is pricey! Along with getting to see all my doctors again (yay!), I get my supplies, insulin and everything else I need to get my a1c back down (it was a 7.9). It’s not terrible, but I was doing much better this time last year. I actually thought it was going to be higher!

With that said, I took the time to tell my doctor about the issues I’ve been faced with and really, nothing has changed since the last time I was there– besides the fact that I wasn’t checking myself enough due to a shortage of supply. I feel like most of the time, it doesn’t matter if you have diabetes or not, doctor’s advice is usually the same: Do more exercise, lose more weight, you’re doing fine, at least you’re alive. We’ve all heard it.

This time though, I was scolded about not wearing my CGMS, which I admit slipped to the wayside, again due to shortage of supply. But, not to fear! I’m back on it.

As I was sitting there with the doc, reviewing the printout of history from my pump, what I call my diary because, well, they know EVERYTHING just from looking at a few numbers on paper… and graphs, and charts, and totals, I saw the scatter of numbers throughout the pages. Most notably were the days where I checked only once or not at all.

**[If you know anything about diabetes and this isn’t the first time you’ve heard of this situation, you know how important it is to check yourself. I’ve written about it here. The doctor refers to not checking as the “dangerous road.”]**

This is when the guilt sets in. There are days when you wake up and you just don’t want to deal, so, putting your health at risk, you don’t. It’s not to say that it is the right thing to do, but it happens. For those who don’t have diabetes, let me just say, it gets exhausting. Always thinking about what you’re eating, the amount of sugar, carbs, counting, shots, boluses, double checking how you feel, checking blood sugar, making sure you’re on top of your life! Numbers– all numbers, all the time. So even though it sounded like a good idea to skip on checking out where you were and how you were doing in terms of blood sugar levels, it’s not in the long run and you look like a bad student at the doctor’s office.

At this point, I’m too old to shout out, “But my a1c was a 7.9! That’s still pretty good!” But that’s how I felt. It was a sigh of relief, it was a way to loosen the hook I’d always be on with my diabetes. But you know what? I didn’t show my work.

When the doctor downloads all the information that my purple insulin pump stores in its computer system, he sees what’s going on like when I drop and when I’m too high and all that jazz– my personal life and what my insides are doing. The graphs and charts are only possible with data, but if I’m not checking myself or wearing my CGMS there is no data. The data here is the long division work I did in my head and didn’t show on paper. The a1c result is the answer that I got kinda right. The only reason it isn’t in the “correct” spectrum is because I didn’t show my work, thus slipping up in the end.

Because I didn’t do the work, my doctor couldn’t tell me how to fix it. As much as this is about pricking your finger and sampling some blood, NOT doing actual facts and figures in your head, you’d think it’d be easier, right? Well, besides my need to ration supplies, it’s easy to forget to check. I’m running to work, I’m busy at work, I’m running home, I’m running around, living life, doing things and then, “Oh, shit! I have to check myself!” Does that not happen to you? It happens to me all the time, which is why the CGMS is good for me. It’s stuck there and that’s it. It tells me when to check and I’m good. For the most part. Technology has been known to fail.

So based off of what he knew for sure, he changed my basal rate, changed my carb ratio and sent me on my way for blood tests.

Usually, when I leave the doctor’s office, I’m known to dwell too long on the whole ordeal. I cry most of the time as a release of energy, anxiety and stress that living with diabetes brings about. I’m reminded of everything I have to do to not die a slow and miserable death, and at the same time, I swear that I’m going to change. The difference this time was that I had company and I had to explain things. He told me that I wasn’t perfect, that I’m human and that he was going to support my habits that I intended to build on. I didn’t cry but instead I accepted the fact that I do what I can and sometimes, things don’t just go the way you want them to.

Life is a tumultuous rollercoaster on its own. Sprinkling in some much needed care adds a little anxiety, but more, it adds the motivation needed to feel better and more in control. In the end, I’ve realized that in order to take control of my diabetes, I’m going to have to do the work and hopefully the more corrections I make on my process, the better my results will be.

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My Diabetes Advocacy

I reread an interview I did a few years ago during National Diabetes Awareness Month aka November. Although I felt that it could have been a bit more concise and articulate, it made me think about what I said and how I said it. If you take a look at it, I go into a lot of specifics and thought processes of my own. Incidentally, it made me think about my diabetes advocacy and quite frankly, where it went.

Yeah, I’m a busy person. I have about 10 jobs and most of the time my friends think I have no time for them, but letting my advocacy slip is like letting my health go. I feel like it goes hand-in-hand. One cannot exist without the other. And I started to wonder, was I burning out again without knowing it?

It’s possible to avoid your health by making yourself too busy. People do it all the time. They’re too busy to work out, too consumed by other things to eat better or monitor their lifestyle. Could I be doing the same thing when it came to taking care of myself and just hadn’t realized it? Was I using my work and my extracurricular activities to bury the fact that I wanted to forget I had diabetes… again?

Truth be told, I haven’t had insurance since I was laid off my last full-time job. I just started a new position where I’ll have it again, but knowing there were inhibitors to caring for myself made me almost wish I didn’t have diabetes. I still checked myself and worked out and ate all right, but the idea of having to re-order pump supplies and having to go to the clinic instead of my world-renowned endocrinologist scared me. I was in this position again for wanting to work for myself and be on my own a bit. I was also unaware of this new insurance marketplace but at the same time was set on the fact that I would find a job when I needed it, which I did.

However, when it came to my presence on social media and out in the public sphere, I found that I was lacking. I didn’t blog very much. My posts about #BlueFridays had gone to shit and my @Kikisbetes Twitter feed wasn’t very active. Hell, my profile picture on the account doesn’t even look like me anymore. But now as I reflect on the past six months, I realize that I haven’t let my advocacy die. My social media advocacy, might have been impaired for a while, but not my roots for the work I was actually doing. It just goes to show the world we live in. More importantly, the world I live in– if you’re not on social, you don’t exist.

During November 2015 I made an offer to a nonprofit from the Brighton Park neighborhood here in Chicago to speak to groups about diabetes for free. I thought, “Why not get out there, meet people in the community and spread some diabetes awareness?” I wasn’t working regular hours and had time during the day to dedicate to hear myself talk about something I was a supposed expert in. Not an expert– just blessed by autoimmunity.

Needless to say, they took me up on the offer. I was able to speak to a group of mentors who worked with parents and their children. I was there to let them know about diabetes awareness, symptoms and preventative measures. A few months later, I spoke to a group of teen moms about what to look out for in their little ones, the importance of taking care of themselves while pregnant and why nutrition is of utmost importance to learn and be aware of.

The flame burns eternally inside me to work and advocate for those who may have or have diabetes, including myself. It’s in my head all the time and every chance I get, I talk about what I know, what I’ve learned, what I can do better and how we can help others educate themselves on having this disease (or disorder, in my eyes, if you’re Type 2).  Learning that others have issues makes me want to work harder for them and myself, making sure that I don’t let my health slip.

In the end, I’m still here. I may not take a picture of myself for #BlueFridays and may only sporadically Tweet about my drops and low blood sugar levels, but know that I’m doing whatever it is that I can to help those around me in their battles with diabetes. My diabetes advocacy will never die.

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The Drop

Earlier tonight, after a day of working out and hanging out with my family, I came home to relax and as I awoke from a nap, I realized that my blood sugar was rapidly dropping. It’s like feeling that someone has altered your equilibrium.

You’re weak, yet you can walk. You’re unfocused, yet you know what you have to do. You think you’re relatively low when you feel the beads of perspiration emerge from your pores, yet you don’t really know how low you are until you see the number.

Tonight, my number was a 33. Yeah, that’s totally not normal. In recent days, I’ve dropped to 44 and 45. I know, I know I have to watch it. Scottie Pippen’s number is the straw that broke the camel’s back. Sorry for the cliche statement.

So as anyone who can express their thoughts with words, I wrote a bit directly on my Facebook page using my phone while laying on my bed, t-shirt still soaked with the sweat from the drop, feeling that at 9:30 p.m. I was going to go to bed just to wake up refreshed and start over again tomorrow. However, I started feeling better, washed the dishes and here I am, making a long overdue blog post out of the Facebook post that is too long for anyone in their right mind to read. It’s too long for social media, but hey, that was my outlet.

With that being said, here it is. The Facebook post no one should have had to endure without clicking on a link to my blog. Thanks and have a good night.

You never realize how much you take your body for granted until its use is challenged. For people with diabetes, the thought is always in the back of your mind.

You feel every time your blood sugar goes up, each time it goes down and always have the desire to feel the best you can. You’ll give up favorite foods, sacrifice sleep and succumb to stabbing your fingers just to keep your body in check.

You’ll never really have a peace of mind, no matter how many devices you have attached to your torso. However, you’ll find it pretty cool to make light of the situation by calling yourself a cyborg and knowing that it really is true.

As someone with type 1 diabetes, your blood glucose does drop to the point of fear. Knowing that you might black out before the orange juice hits your lips; feeling bullets of sweat drip down your face, your back; hyperventilating even as you shove glucose-increasing food in your mouth and praying that the feelings stop as quickly as they came. They usually never do.

The situation quite literally knocks you out. Your body feels like a rung out towel. You look as though you did an hour of cardio, hair and shirt wet, leaving you feeling cold, even in the middle of summer. You want to sleep, giving your body time to bounce back from the low that might have killed you, had you not felt it. Tunnel vision, lack of leg function and weakness is not foreign in these situations, making it scary to live alone; making it scary just to think about not being able to function. Everything you take for granted is questioned.

As you level out, things slowly get back to normal. But you’re impacted. You’ll never forget the feeling. It makes you want better. Makes you hate the disease you didn’t ask for. Makes you wish you had a normal body. And in the end, you know you’ll never have what you want but ultimately, the education, experiences and lessons learned have made you everything you are and everything you’ll ever be.

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Hope? Is that the right word?

As much as we all want to believe there will be a cure for diabetes, especially Type 1, in our lifetime isn’t it still a reach?

Happy New Year to you, too.

For as long as I can remember, there has been plenty of talk regarding a cure, whether that was in the form of an artificial pancreas (which would help to manage diabetes as normally as possible) or the use of stem cell research to find a way to replenish the dead beta cells. A cure would be great but at this point, the fact that we all use insulin pumps (or something that’s technologically advanced) for insulin therapy and continuous glucose monitoring systems, it seems that an artificial pancreas would be much more plausible in our lifetime. A lot of the time, we know the cure isn’t coming, so we settle for the best that we can get.

But is it really settling? I guess that’s the most that we can do as people living with an autoimmune disease. I mean, had it been back in the 1800’s we all would have been dead by now. It’s not a morbid thought as much as it’s the truth. We are attempting to adhere to every single bit of technology so that our life is “normal,” and we don’t die from the inability to care for ourselves.

The more and more you hear about advancements in research, the more and more I ask, “So when are the trials happening?” and “When do we get to try some of this good stuff?” We’re like junkies looking for the next taste of hope in the form of a medical journal article. I even want to have all those different tests done to make sure that I do really have diabetes and not some crazy, unexplainable gene mutation that can be cured by taking a pill.

Now they tell us that they’ve successfully taken adult skin cells and converted them to fully functional pancreatic cells. What? You mean, the answer was in our skin all along? And can you actually replenish cells that have been that far gone from your pancreas? I just have a million and one questions and a lot of the times, no one can answer them or clarify them for me. You know why? Because that research is usually done on rats and nothing or nobody else.

I wonder if it’s an issue with funding or the fact that they realize this is impossible in humans. At this rate we’re going to be taken over by rodents because those garbage eating animals are all going to be cured of their diabetes. I’m wondering about the 370 million people worldwide who suffer from diabetes and more, those who are dying every day from diabetes complications. What about them? Why hasn’t anyone stepped up to actually find an answer to the problem?

I digress. This is a medical breakthrough. They always all are. My question is, when do we actually get to see how and if it can impact humans? Will it ever get to that point? Does this really actually mean anything for all of us who live every day with diabetes?

I guess we’ll just have to wait to find out.

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Does diabetes really disable me?

Through work, we are voluntarily asked to fill out a questionnaire regarding disabilities– making sure they hit quotas, I suppose, on supporting the people with disabilities in this world. I voluntarily answered the questionnaire, like usual, not afraid of any question that should come up, especially because I don’t think of myself as having a disability.

As I reviewed the questions, I saw it on the list: Diabetes. All of a sudden, a trigger went off in my head and I almost closed the questionnaire because I didn’t want to admit that I had a disability. Would anyone?

In the end, I didn’t close it and I ended up finishing it, however there was a feeling of anger and resentment that went through me. I thought, I’m never going to be like everyone else. I’ve come to this realization many times in my life– it wasn’t something new to me or to anyone. In fact, I’ve written about how diabetes made me different multiple times and I wasn’t ashamed of it.

But now, work knew. The people who employed me and those above them now all knew that I had diabetes. Again, this is not something that I’m ashamed about, however it is something that I’m weary of especially because to those who don’t know me, I’m another person with diabetes– enter all of the stereotypes that screw with the mindset of those who are ignorant to the disease.

Was it really a disability? A few hours later that night, I told one of my best friends about the questionnaire. “You don’t have a disability!” he said to me, so confidently. I smiled because I was grateful to him and to all of my friends who feel the same way.

It’s not a disability simply because I don’t treat it like one. I technically have not been disabled from doing anything in my life. Besides wanting to maybe be in the peace corp or a fighter pilot (because I mean, who doesn’t want to do something like that in their life?), I’ve done everything that I’ve ever wanted to do. Sure, a vital organ in my body doesn’t really work the way it should and I’m part cyborg because of the pump that I wear on my hip, but in no way was that a disability.

I take care of myself as best as I can. Sometimes that does slip from me because of my busy lifestyle and all the different things I get myself into. At times, I don’t check myself as frequently as I should, but I always keep my pump on. That’s one thing that I can’t not do; I can’t not take insulin. It’s not like taking aspirin or a pill of some sort. It’s not a medication that I’m taking to help me live. It’s a hormone that I NEED to live.

The kicker here, is that diabetes can become a disability. If I let it slip enough, I can go blind, lose a limb, lose my life. This is why I continue to go to the doctor so that I can stay on top of my issues and making sure that I can prevent any harm that may come my way.

It’s important to track and important to know what’s going on in my body, since it’s not something that I can take advantage of and not think about. I was told to go back to the continuous glucose monitoring system to help better control myself and I have. There are dietary restrictions that I’m putting on myself just out of mere knowledge and understanding that certain foods don’t cooperate with me. I have to do these extra things so that diabetes NEVER becomes a disability.

There may be sacrifices, but I don’t see them that way. I see them as ways to live a better and longer life. If not eating rice and bananas means I get to stay here and enjoy life for a few more years– then so be it. Here I’ll stay.

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Gobble.Gobble. The 5 Things I’m Most Grateful For This Year.

I could have said 10. I feel like 5 was just the right amount though.

Every year I write a blog about diabetes and Thanksgiving, or so it seems. I feel like we all do. We talk about diet and eating, bolusing and carbohydrate counting. I’ve written about the things that Diabetes has given me years ago but I’ve never written about the things I’m grateful for because I have diabetes.

So here we go.

1. I’m grateful that people want to know my story. 

In the past few years, including this year, I’ve had people ask me for an interview because of my advocacy and activism online. I’ve been featured in Sanofi’s Discuss Diabetes blog and most recently, I’ve been on La Bloga as a featured interview. I find it extremely interesting that because of my blogs like this or tweets that I put out there for the world to see, I’m contacted. On one hand, I want to tell stories that aren’t normally told (in my case, the Diabetes-Latina-Female version of things) but I also don’t want to be the only one and at times am sad that it seems that I am.

2. I’m grateful that I have a great job with health benefits.

When the world spends $245 billion on diabetes, you have to wonder if there’s anyone helping the world out. At times, I battle this only because when I didn’t have health insurance, I was getting by. However, now that everyone MUST have health insurance, I’m glad I’m getting it through my job and not having to pay for it on my own. There is something sacred about this whole health insurance thing. We are grateful to have it, yet it’s the epitome of capitalism-at-work. We still put so much into having insurance that at times I wonder if the pay out is what I get out of it. I still have to pay when I go see the doctor because well, since it’s up to the hospital, they over extend their value. I went to a specialist recently and hey, I have insurance, I pay a $40 co-pay to see you and she quite literally walked in, spoke for about 15 seconds and left her interns or residents to do the rest. No asking how I am or how I’m feeling– she just told me her recommendation and that was it.

I still have to pay out of pocket for things like pump supplies, insulin, strips– I have to pay over $100 for both of those together. Why? If you have insurance, your prices go up. If you don’t, they’re cheaper. How much sense does that make? Regardless, I’m grateful that if anything should happen, I’m covered. Hopefully.

1496676_10104335075356050_7380396918683718610_n3. I’m grateful for all the people who have supported me through pictures, questions, chats and talks. 

World Diabetes Day 14 was the best. I was all in blue and got my friends and family members to wear blue, too and send me a picture in support and awareness for Diabetes. I was so humbled to see people actually do this for me and those they love. It’s not just about helping to cure those who are ill but it’s about helping to educate those who need the education.

All of my friends and family pictured here, knows what it means to me to have their support. They’ve been with me in the hard times, have read my blogs, supported me in my efforts, asked me questions and pushed me to be the best advocate I can be. They make my work within this space, my awareness-building worth it.

To these incredible people, I say THANK YOU!

4. I’m grateful that I live in a world class city. 

Chicago is known for so many things, including its hospitals, doctors, research and resources. This ties in to having insurance– because of insurance, I’m able to take advantage of all of these things in order to take care of myself and to make sure I’m in good health. Chicago has my heart as my birthplace, my city, my representation of what home is. I don’t ever want to leave, but it’s also because I don’t have to. I hear from other people about the challenges they face in finding doctors, where here in Chicago, I’ve seen one who’s world-renowned, and the other who is one of the best in the region. Researchers, studies, the forefront of medicine and what can be possible– it’s all right here. I’m lucky to have it.

5. I’m grateful for my parents. 

Whether they were afraid to let me go to college or move out of the house, they never stopped me from doing anything. My parents, as a team, taught me how to take care of myself and trusted me to take care of myself when it came time. My mother never sat on me about my A1c after I was 18 years old. Instead I told her about my visits to the doctor and how I planned to make it all better by myself. My dad would charge me with sports and exercise, being my coach in order to get my blood sugar down as I was growing up. Now I tell him about the technology and the numbers and how I see things changing and improving in my health. They have always been my support, have been there to hear me vent, have made it possible for me to take care of myself and definitely set me on the right path. I’m always grateful for my parents, but in this sense, I couldn’t have asked for a better team to handle this life changing disease.

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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.

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Having Vitiligo AND Diabetes: How I’ve Dealt

Happy World Diabetes Day everyone! Instead of writing about something that everyone is writing about right now (something along the lines of “What Diabetes Day means to me”) I decided that I would open up about something completely different.

I haven’t written about this and it might be because I was afraid to. Sometimes when I think about the issues that I face, health-wise, I get upset. Upset, agitated, bitter—basically, everything that a person with diabetes goes through on their own without any other issues on top of it, yeah. That’s normal for people like us. Diabetes has become part of my normal life. It’s a part of me that I have grown up with and have adjusted to. But what happens when you develop something else, later in life, that you have to actually cope with?

I feel like I never really had to “cope” with diabetes because it was always there. I knew no difference. But when I recently started developing vitiligo, it worried me. What is vitiligo you ask? Well, it is a skin condition where you turn white. Remember Michael Jackson’s skin condition? Yeah, same one. It’s not contagious, it happens slowly, there are no other health repercussions because of it, but it is considered an autoimmune disease.

The doctors love to throw at me like this: It’s an autoimmune disease and you have Type 1 diabetes so, it kind of makes sense. And I come back with: No, it doesn’t because I have Type 1B which is not autoimmune diabetes, so learn to ask questions and get your facts straight before you assume. OK, that’s not how I responded but it’s how I would have LOVED to.

Earlier this year, approximately in May, I noticed the skin around my mouth lightening. I originally thought 1381949_587130964679416_1936705440_nit was just dry skin so I started putting moisturizer on more often. However, little by little, I noticed other areas of my face lightening as well.
Then the summer came full blast. And you know what happens when the summer gets here? I get toasty. I’m a tan person, if you’ve ever met me and I’ve always taken pride in the fact that I could soak up the sun like a sponge and display the golden color all throughout the winter months.

Well, when it comes to my face, that is no longer. People have tried to make me feel better about it, saying they don’t notice it or that it doesn’t change the way I look. But initially when it was spreading (which it does very quickly within the first few months), I couldn’t stand the sight of myself. I looked weird. I couldn’t go outside without makeup on. And something started to happen that hardly ever happens to me– I started feeling sorry for myself.

A few months later, I realized, “Well, who am I to be pissed off? If God thinks that I don’t need a working pancreas or a solid colored face, well then, I don’t need it.” I got over the issues that I was facing. Quite literally. The fact that I wasn’t going to be able to get an even tan during the summer didn’t phase me any more. It was just my face. It didn’t change my personality, my insight or my drive or ambition. I was the same person, regardless of what color my skin was. This isn’t even a racial issue!

I have little spots on different parts of my body now. It’s not spreading too terribly fast either. I decided to Google vitiligo the other day and found another completely different community. It was overwhelming. But nevertheless, the fact that I have diabetes also helped me to get over it. I have worked so hard on keeping myself healthy that a skin condition with no deathly repercussions wasn’t going to phase me. In fact, it showed me how vain I was.

Looks mean absolutely nothing and if I was too conceited or vain or worried about my looks, I can’t be now. Friends have told me that I’m still pretty, others have said they don’t notice it and I think the best comment was, “When I look at you, I see beauty. That’s all I see.” Well, I can’t argue with that, now can I?

I still have to be careful in the sun. I’ve seen a dermatologist for the vitiligo and they suggested that I try light treatment that my insurance is fighting with me to pay for. Yeah. That’s never going to get old. I’m also using an ointment for my skin. As much as it might scare some people, it doesn’t take priority in my life. It just doesn’t. I have more important things to worry about, like blood sugar levels, thinking like my pancreas and living life.

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Filed under Complications, Diabetes, Doctors, Health, Stories, Treatments

Gaining perspective to live my advocacy

I put my pump back on a while ago. Although it felt good to be disconnected, I realized that the luxury of it all was constant insulin being pumped through my body. A delicious feeling.

Since my last post, which was way too long ago, by the way, I’ve started a full-time job and I have insurance! It feels so good to say that. Months without insurance felt as though it was 10 years.

Today I called Medtronic to reorder supplies and it was easy peasy. I didn’t have to worry about paying out-of-pocket, I just had to give the information on my pretty little insurance card. I learned a lot, without it. I learned what it was like to have to worry where the money was going to come from to pay for my supplies. I know what it’s like to be down to one infusion set and worried how, if I didn’t have syringes, I was going to get the insulin into my body.

It’s a scary thought, but it was there. Almost as bad as when my pump stopped working. At least when that happened, I did have insurance and was able to get  a replacement within a few days.

You’re going to find this weird, but I liked not having insurance because it put me in an uncomfortable situation. I had to figure things out. I had to worry. All my life I never worried about things like this, but in order to understand my community and what the highest rate of uninsured people are going through. Yep, that’s right. The Latino community has the highest rate of uninsured individuals.

What do they do? I asked myself every time I went to the county hospital. I was fortunate to be educated at an early age, have the resources in order to take care of myself and learn the betterment of my health. But what about those who don’t have everything I did?

I knew what to ask when I went to the hospital. I knew how to “manage up” instead of be dictated to about my health and what was good for me. I knew exactly what I had to say and sometimes, how to say it, in order for the folks helping me to understand just what I knew and how I knew it.

The one thing that I can’t stress enough is education on all counts. I mean, if you are someone with diabetes, educate yourself. If you’re someone who knows someone with diabetes, educate yourself. If you love someone with diabetes, educate yourself.

What a lot of people don’t understand is that there are times when people with diabetes want to give up, we get tired. To constantly think like your pancreas, think about every activity that you do ever day, it’s exhausting along with other daily responsibilities that we have. It’s an effort and what makes it easier is having people who understand what you’re going through.

This is why online communities are so important to many of us. We can find people who go through the same experiences without asking so many questions and bitch and moan as much as we want because, they get it.

If you don’t have diabetes but loves someone who does, the most useful you can be is being an understanding ear. You can understand what it is that we’re going through just by asking questions and doing a bit of research. The support that comes with knowledge is beyond lecturing people with diabetes about what to eat.

I appreciate someone who can help me out by listening and wanting to know. Having diabetes is a part of me, a secret, sacred, special part of me that very few know about. I mean, very few without diabetes know. My DOC, or diabetes online community, knows me well. But that special spot is open to very few.

I want to talk about it. I want people to know me. That’s why I answer questions and I talk about the issues that we go through as people with diabetes, as a Latino community that is not educated properly about their health with diabetes, and I’m not ashamed of who I am or the disorder that I have. I welcome questions. I live my advocacy.

Ask away. I’m prepared to answer.

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Filed under Culture, Diabetes, Doctors, Health, Latinos

And the point of working out is… Bad dreams!

So everyone knows that working out is good for you. That’s no secret. But when you’re living with diabetes and on medication for it, working out is a problem. My doctor used to laugh and would say something like, “Yeah, you work out to lose weight, then your blood sugar goes down and you have to eat.” There’s basically no winning in the game.

Like everything else, there is a solution to the problem, not that I’ve found it yet. Working out is like a double-edged sword. You either have to do it consistently so that your insulin intake reflects it (if you’re on the pump) or you have to turn the darn thing off when you’re stretching, moving and grooving. I don’t work out at the same time every day, so the bolus schedule that I’m on is hard to come by. I can change it every day, but I’m too lazy to do that. Usually my work outs last for about 45 minutes, so I just take it off, do my thing and put it back on. That’s not an issue.

But my question is, how are you supposed to deal with monitoring yourself when you’re not awake?! My problems have always come at night. Either my blood sugar sky rockets when I sleep or it drops dramatically. Take for example, yesterday. Yesterday I came home from work and decided to work out. Midway through, my sugar had dropped to 75 so I took a swig of regular soda and kept going. At the end after the cool down, it had dropped again to 67. That’s when I ate. I hadn’t had dinner so this was my chance to eat without feeling too guilty about it.

As I showered, cleaned and watched a little more television while Tweeting away, I was super-duper thirsty. I went to check myself and I was up at 247. “That’s why!” I thought to myself. My pump suggested about three units of insulin which I manually lowered because I knew that I might drop, and that was that.

As I drifted off to dream land, I had a peculiar dream. I was on the phone with a man who was having a heart attack. At the same time I was in a hospital, trembling and I thought to myself, “Am I feeling what this man is feeling?” I started to shake harder, which is when I opened my eyes. I was wide awake at 3:15 in the morning. As I got up, I was disoriented. I went to check my blood sugar. 37. I had dropped to 37. It was incredible. And there I went, turning on the TV, grabbing my box of Cap’n Crunch and watching a rerun of Late Night with Jimmy Fallon, or whatever it’s called. If you look at my twitter account, you’ll see my comments at about 3:30.

There’s nothing worse that going back to bed after an episode like that. I checked myself again and I was already at 75. I was on my way up. In the morning I was at 209 with a dry mouth and headache. I got my insulin and went about my day. Let me tell you, my body has not caught up yet. Last meter check, I was at 120. With that Cap’n Crunch love affair, I can tell you that I might have eaten everything I burned off with my work out. How terrible is that?

If your blood sugar has never dropped, you wouldn’t understand. The feeling of passing out and not being able to get up when you live alone is horrendous! When I was struggling to get the tiny strip out of the bottle to check my blood sugar, I was sweating, shaking and kept thinking, what if I pass out? Who’s going to help me?

If your blood sugar is too low, that’s it. You die quicker from having a low blood sugar than a high one. Hypoglycemia, when your blood sugar drops below 60, can lead to seizure, coma and even death if not treated. Dying from high blood sugar takes a little more than 24 hours. You can now understand the fear of hypoglycemia to an extent.

There are different ways to solve this problem, obviously eating is one of them. It’s just the control that gets most people. You panic, feel like you’re starving and just want to get rid of that ugly feeling so you EAT! When I was younger, that was my chance to get at those Oreos.

But if, God forbid, you ever see someone pass out from hypoglycemia, what you’re supposed to do is rub either sugar or icing on the inside of the person’s cheek. It’s the quickest way to the blood stream. If there is a glucagon injection near by, you can also administer that.

Glucagon injections do not inject sugar into your system. Glucagon itself is a group of 29 amino acids that trigger your liver to release glucose so that your system is always at a balance. When people pass out, the injection, which is concentrated glucagon, tells your liver to release all its stored up glucose so that your body jolts itself back to normality. Crazy isn’t it? All these things you have to learn!

But there’s always a balance, right? Like eating a snack before bed, which I didn’t do because my sugar was already high. I didn’t want to be that high, so I took insulin for it. I guess this just goes to show that no matter how much you THINK you have this monster of diabetes in check, sometimes you don’t. Your body is still a body, doing things on its own. We’re not machines and we don’t work like clock work sometimes. That’s the reality of it.

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Filed under Diabetes, Food, Health, Personal, Treatments