Category Archives: Doctors

Remember when 2020 seemed futuristic?

It’s the beginning of 2018 and it’s time to set those resolutions, right!? Not so fast.

In an exchange with someone at work, I proclaimed that I’m really not about resolutions because I usually make goals. And with a short break between the past year and the current year, it’s easy to get your head in order and your priorities straight. Time off is an absolute blessing.

Additionally, I had been going through a major burnout the end of the year. To be quite frank, I wasn’t eating well, I was drinking too much and my goals seemed so far off in the distance, it didn’t really matter to me whether they were going to be reached or not.

So what did I do? I set myself up for a refresh. For our Secret Santas at Christmas, I asked for things I’d use in the New Year to improve upon myself– whether that was writing more than I initially had been or trying something new as a form of exercise– the things I put on my list were going to serve some purpose.

Here’s what I asked for:

  • Pens and journals… ‘cause, duh. And I realized that I hadn’t been WRITING in a while. Typing, yes, and it was also starting to make my wrists and hands ache. Uh oh!
  • A Google Home mini or two… (we bought another one)
  • Socks. Can’t ever have too many.
  • A Happy Planner. Have you seen these things? I started following boards on Pinterest but the whole thing is still overwhelming and I’m about two weeks into 2018.
  • A new gym bag. YAY!
  • Makeup brushes… for those days I feel like I need to be done up.
  • A new endocrinologist.

You got me. No, I didn’t ask for a new doctor, but I did change my insurance plan and in case you didn’t know, in-network and out-of-network doctors can be the difference between having a savings account and not having one anymore. By the way, I’m still paying off a bill from Feb. 2017 because guess what– this dummy didn’t pay attention to the network.

So, I stuck with my plan and found a doctor close to home that works with Type 1 patients regularly. YES! If you haven’t read my other blogs (and I don’t expect that you would have), you would have seen that I’ve been to a variety of doctors and have had a variety of experiences with each of them. By this point, it’s kind of like dating over the age of 30– you’ve made up your mind halfway through the first date.

Within the first third of the appointment, I already knew I had hit a mini jackpot. When you can go to a doctor’s office, not a hospital, and find a representative for your insulin pump dedicated to that office who can help answer questions, is an RN and also has diabetes, it feels like you’ve won the lottery. I was kind of hooked after that.

The doctor himself was nice and talkative, made me feel welcome and didn’t lecture me. “How long have you had diabetes?” he asked me. “Twenty-six years,” I said, I think he knew I had been lectured long enough.

I digress. So, before going to see my new doctor, I decided that I was going to go back to the rudimentary way of keeping track of blood sugar levels: I started writing them down again. Not only was I writing down my glucose numbers but I also started writing down things that I was eating and at what time. Along with that, I was listing carbs and units of insulin I was getting.

I know. Don’t tell me. In this day and technological age, I shouldn’t have to manually write anything down, but call me old fashioned; I like paper and I like to see everything together over a day’s time.

As you can probably assume, I’m holding myself accountable for my actions and what I put in my mouth. I’m watching my carbs and I’m trying to get my steps in daily. If it weren’t for this stupid cold, I’d be working out right now. I hope to get on that this week and get back into a daily regimen that will give me the results that I saw a few years back when I was dedicated.

This can all seem for superficial reasons, right? Like, I’m getting married soon. So many people have been trying to remind me of that recently and although I’m excited, I’m not allowing that to be the beginning of my life. I’m alive right now and there shouldn’t be anything preventing me from living to my full potential.

Just like I didn’t become the woman that I am because I met my fiance, I’m not letting different milestones define who I am as an individual because I am me 24/7/365. No offense to the wonderful man I’m about to marry– I definitely found someone who compliments my character and who is my partner in everything I do– but I am my own human.

So here’s to 2018– a year in which we will define ourselves for ourselves; in which we’ll reach for the highest mountain and tallest branch; in which we will achieve our dreams and make wonderful memories; in which we realize just how much we have to be grateful for. Here’s to us.

Advertisements

Leave a comment

Filed under Diabetes, Doctors, Health, Personal, Stories

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.

Leave a comment

Filed under Diabetes, Doctors, Hospitals, Personal, Stories

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.

Leave a comment

Filed under Diabetes, Doctors, Health, Stories

Being Healthy Isn’t Profitable

It’s been another long while since I’ve written, but I feel that it’s time to do so again. The time seemed right, so here I am.

A few months ago, I started thinking about how much money I spend on diabetic supplies a year. It’s well into the thousands and I thought to myself, “Wow, those girls at work don’t have to worry about this. They can save or spend that money on things.” I was a tad bit jealous, not only because I’m an Aries, but because well, they technically took home more of their money than I did. Mine went to life support.

Then, I went to see my doctor. Because I have high cholesterol and it runs in my family, my doctor has been talking about a pill. “No,” I say every time shaking my head side to side. “I’d rather try to lower it naturally than to take any medication.” See, the way I look at it, insulin is not medicine. Insulin is a necessary hormone needed to live. Without the hormone we die.

I don’t want to take medicine. It was a decision I made when I realized how much of in control I could be of my diabetes and I decided to take full ownership of my body. But how much more would I have had to pay every month for cholesterol medication?

If my body didn’t crazily decide that insulin was bad for it, I would still be making it myself. If it wasn’t for that, I’d be healthy, paying for maybe aspirin or cough syrup once in a great while as opposed to steadily paying about $300 a month for the rest of my life. It’s slightly jarring if you think about it.

Thousands of dollars for each person that  has Type 1 diabetes in this country. That’s millions in the pockets of these pharma companies who just so happen to be in charge of creating the “special serum” that keeps us alive. We live at the mercy of these companies! And this is just ONE of the many chronic illnesses that exist.

From cancer treatments to thyroid medications, if you’re sick, you got to pay. It’s going to keep you alive and well. Wouldn’t you pay to keep yourself alive, defying the entire theory of “Survival of the Fittest”? How much is your life worth?

The more you think about it, I don’t know if it necessarily gets depressing, but the truth of it all makes it dreary. And once again, I’m consumed with numbers and the handling of my life.

Leave a comment

Filed under Diabetes, Doctors, Health, Insulin, Stories

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

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

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

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.

3 Comments

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.

Leave a comment

Filed under Culture, Diabetes, Doctors, Health, Latinos

The Test Strip

teststripsThe bloody test strip counts down and beeps. 185. Decent. You’re OK. It could be lower, but at least it’s under 200.

That little piece of plastic tells you so much. It lets you know that you’ll survive at least another 12 hours.

The worst thing that can possibly happen is when you put the blood on the strip too early and you get the “Error” message. Bloody hell! Quite literally. And you can’t reuse them, until now. Bayer came up with a great new test strip that will tell you that there is too little blood on it and will give you time to add more. But can I use that? Nope.

No insurance.

Moving on. These little pieces of plastic give you glimpses into your body and your blood. What else can do that on a daily basis? You have to know what your levels are and how they’re going to affect your body and we have the capabilities to see that. Sometimes I feel like Superman.

Did you know that back in the day before these jumps in technology, tests used to be done with urine and a color coding system in the ’60s? The idea of testing blood for blood sugar glucose levels wasn’t an option until 1970 and the meter that weighed three pounds and cost about $650, was only used in physician’s offices.

My, how far we’ve come in the past 40+ years. And those meters have changed the face of diabetes care. Teaching people with diabetes to monitor themselves, to have some sort of control at their very finger tips is amazing. It’s what keeps us alive and in control.

Too bad these little strips are some of the most difficult pieces of diabetes wellness to come by. The meters, you can get for free. Ask any person with diabetes who has been diagnosed at least five years ago and they’ll tell you that they probably have at least three. I have about seven. Meters are a dime a dozen, but it’s the strips that cost you a pretty penny.

Yes, there are options and ways to pay less than what you find at the stores, but the hoops that you have to jump through to get that are sometimes outside of practical reason for a lot of individuals. At the pharmacy today for the county hospital, I heard it various times: “I’m supposed to come in for this appointment to get my medicine, but I have to work and I can’t afford a day off.” At which point, I thank my lucky stars and the Universe that I am able to be in charge of my own schedule and that I work for myself. I can attend all those appointments.

The way I see it, the more appointments I attend and the more people I talk to, the more I’m learning about myself and my issues at hand. It’s fine. But… back to the strips!

A box of 25 strips which would last me about five days is about $38 which would cost about $230 a month. It’s expensive and pricey. People who haven’t figured out how to get their hands on these little windows into their body, are splitting strips in half to use one twice. When I heard about this I was floored. I didn’t know you could do that, I said.

When you know you need something, you’ll go to whatever lengths to get it or to make it work for you. It’s incredible where technology has us now a days. And to think, my doctor told me the other day, “Give in to the technology.”

1 Comment

Filed under Diabetes, Doctors, Health