We all make them. When you’re a full-time vital organ, things become rote. Test, calculate carbs, bolus. When you’ve been doing the same thing over and over again for years upon years, sometimes you can even forget you’ve done it. I’m terrible to check my blood sugar twice in a row because I’ve forgotten that I’ve done it the first time.
One thing I’ve not done in years (in fact, it was 2005 if I remember correctly) is bolus, or give an injection twice. Sadly, I can’t say that anymore. Monday I was home for lunch and checked my blood sugar and bloused for lunch. Then I got my food out of the microwave and bloused again before I ate. It wasn’t very long before I realized it. But it was still too late to take the insulin back. :/ The bolus was done and I had twice as much insulin on board as I should have had.
So, I did what any good diabetic would do. I went to get ice cream. :) Talk about a good excuse. Honestly, if there had been a cupcake store in my hometown, I would have gone with cupcakes, but since there weren’t, a Blizzard from Dairy Queen did the trick. My blood sugar didn’t drop. And I had a very happy tummy.
My biggest issue in the whole thing was that blousing (and testing) has become so routine for me that I forget I’ve done it. I know I’ve been at this diabetes thing for 25 years. I’ve been pumping for almost 5 years now. And I know that because I do this everyday it is supposed to be “easy” or at least normal for me (and it is). But it also bothers me that it’s so normal. I wish that blousing and testing and counting carbs weren’t normal for me. I wish I didn’t have a need to know that information.
This post really started out just to tell you about how crazy I felt about double blousing. Instead it has turned into this: I’m tired today. I’m tired of dealing with diabetes. I don’t believe it’s burn-out. Just exhaustion. I don’t often get like this, but I’m tired of dealing with diabetes. I’m tired of testing and blousing and counting carbs and doctors appointments. And I’d just like a couple of days off. Is that so wrong?
But I’ll keep going because we all know there are no vacations with diabetes. My heart only breaks for the children who are dealing with these feelings as well. And I’m just praying that they won’t have to be sitting at 25 years and complaining about double blousing. That somewhere in some smart scientist’s mind, there’s a cure waiting. And that there’s the funding to make it a reality.
Thursday, March 31, 2011
Tuesday, March 29, 2011
Journey for Control
Here's to knowing what you want, and trying to make a move to get it.
Several times over the past year I've noticed an announcement in my local paper about diabetes education classes. I've never called about them because, let's face it, after 25 years of living with diabetes, I know more than some medical professionals. At least when it comes to diabetes. But after all of the talk in the D-OC about being an advocate, I thought I might call to check on these classes. Even if I didn't pick up anything new, I might be able to help someone else, right?
So I called the number. It was strange because it was a toll free number, and I couldn't understand why, since the classes are held at the local hospital. When the computer answered it said something along the lines of “Welcome to Journey for Control. Please hold for a representative.” In fact, I called twice to be sure I got the name right.
I held. And I talked with a lady who was basically just wanting to take my name to register. But I had questions. I asked her if the hospital was the one putting on these classes. They aren’t. Merck is. I asked what the topics of the classes would be. She stated there were 3 classes. She listed them off to me, and I wrote them down. Sadly, I lost my list, but the names all sounded like the same topic. Basically getting control of your blood sugars, and topics about food.
I told her I didn’t wish to sign up at this time, but that I would let them know if I was interested. And then I got down to researching this stuff.
Apparently Merck has a program called Journey for Control. The website seemed to be focusing on Type 2 diabetes. After a little further research I figured out why. The only diabetes related product that Merck produces (that I could find), are two pills that help with T2 control.
Part of me thinks that I should have signed up for the classes anyway. To have a chance to introduce people to the D-OC and other resources that can help them out. But I have serious issues with attending diabetes education classes that are hosted by a company that deals exclusively with T2 patients. I’m not a T2. And I hate feeling excluded, or like people have forgotten that there are a lot of people dealing with T1 diabetes.
I’m not bashing Merck. I find it admirable that they are offering free diabetes education classes, taught by CDE’s in small, rural communities like mine. The program itself seems like something that would be a good start for people who don’t know what’s going on with diabetes, or for people who have been recently diagnosed and given little guidance by their primary care physicians (a common thing in rural areas), and no referral to an actual endo.
I guess I’m just feeling a little disappointed in the fact that I didn’t have a chance to go to something in my town and have a chance to share the wonders of the D-OC with people. Should I have signed up? Maybe. But I didn’t quite feel comfortable about it.
Several times over the past year I've noticed an announcement in my local paper about diabetes education classes. I've never called about them because, let's face it, after 25 years of living with diabetes, I know more than some medical professionals. At least when it comes to diabetes. But after all of the talk in the D-OC about being an advocate, I thought I might call to check on these classes. Even if I didn't pick up anything new, I might be able to help someone else, right?
So I called the number. It was strange because it was a toll free number, and I couldn't understand why, since the classes are held at the local hospital. When the computer answered it said something along the lines of “Welcome to Journey for Control. Please hold for a representative.” In fact, I called twice to be sure I got the name right.
I held. And I talked with a lady who was basically just wanting to take my name to register. But I had questions. I asked her if the hospital was the one putting on these classes. They aren’t. Merck is. I asked what the topics of the classes would be. She stated there were 3 classes. She listed them off to me, and I wrote them down. Sadly, I lost my list, but the names all sounded like the same topic. Basically getting control of your blood sugars, and topics about food.
I told her I didn’t wish to sign up at this time, but that I would let them know if I was interested. And then I got down to researching this stuff.
Apparently Merck has a program called Journey for Control. The website seemed to be focusing on Type 2 diabetes. After a little further research I figured out why. The only diabetes related product that Merck produces (that I could find), are two pills that help with T2 control.
Part of me thinks that I should have signed up for the classes anyway. To have a chance to introduce people to the D-OC and other resources that can help them out. But I have serious issues with attending diabetes education classes that are hosted by a company that deals exclusively with T2 patients. I’m not a T2. And I hate feeling excluded, or like people have forgotten that there are a lot of people dealing with T1 diabetes.
I’m not bashing Merck. I find it admirable that they are offering free diabetes education classes, taught by CDE’s in small, rural communities like mine. The program itself seems like something that would be a good start for people who don’t know what’s going on with diabetes, or for people who have been recently diagnosed and given little guidance by their primary care physicians (a common thing in rural areas), and no referral to an actual endo.
I guess I’m just feeling a little disappointed in the fact that I didn’t have a chance to go to something in my town and have a chance to share the wonders of the D-OC with people. Should I have signed up? Maybe. But I didn’t quite feel comfortable about it.
Thursday, March 24, 2011
Getting Back on Track
Honesty is (almost) always the best policy. And truth is a way to let people know that just because we blog, doesn’t mean we’re perfect. It’s also a way to have people hold me accountable.
So here goes:
-I haven’t been to my endo in over 6 months.
-I haven’t been to the eye doctor in over a year.
-I haven’t been to the dentist in over a year.
I honestly don’t believe my diabetes care has suffered any (although I could be eating healthier and exercising). But the fact remains, that I’ve not had the professional medical care that I should be getting. And I don’t have a good reason for it. I’m very blessed with health insurance that covers almost everything I need. My co-pays aren’t terrible. It’s just been flat out laziness.
And like with most things, the longer I put it off, the easier it is to put off. And I’m hoping that by blogging about it, I’ll have the motivation to start getting this stuff done. Because by making my life with diabetes public, I’m forcing myself to do things that I should. Because I know that members of the D-OC will ask me about it. They’ll want to know about those appointments.
I’m going to start out by calling to get an eye appointment. My time frame: make that call in the next week. Ask me about it. In comments on this blog, on facebook if you’re my friend, and on twitter if you follow me. Keep me accountable.
So here goes:
-I haven’t been to my endo in over 6 months.
-I haven’t been to the eye doctor in over a year.
-I haven’t been to the dentist in over a year.
I honestly don’t believe my diabetes care has suffered any (although I could be eating healthier and exercising). But the fact remains, that I’ve not had the professional medical care that I should be getting. And I don’t have a good reason for it. I’m very blessed with health insurance that covers almost everything I need. My co-pays aren’t terrible. It’s just been flat out laziness.
And like with most things, the longer I put it off, the easier it is to put off. And I’m hoping that by blogging about it, I’ll have the motivation to start getting this stuff done. Because by making my life with diabetes public, I’m forcing myself to do things that I should. Because I know that members of the D-OC will ask me about it. They’ll want to know about those appointments.
I’m going to start out by calling to get an eye appointment. My time frame: make that call in the next week. Ask me about it. In comments on this blog, on facebook if you’re my friend, and on twitter if you follow me. Keep me accountable.
Monday, March 21, 2011
Educate & Advocate
Why do we get so lazy when it comes to diabetes? Why do we let opportunities in educating people about diabetes pass by? I have a theory about this. With me anyway.
My theory is that I just don’t want to deal with diabetes. Not in a general sense. I deal with diabetes 24 hours a day, seven days a week, 365 days a year (and 366 days in a leap year!). Diabetes, while not always at the forefront of my thoughts, is something that always exists in my life. I don’t like people knowing all the literal ups and downs of living with diabetes because I hate the pity and sad looks I get from people.
So, what do I do? I hide it. I don’t hide my diabetes. People know I’m a diabetic. I don’t have a problem with that. But I hide the bad stuff. Sometimes I think people are under the impression that I have perfect control. But I don’t. I do what I can. I believe I have better control because I have the D-OC. In a totally indirect way, you guys keep me caring about myself and keep me on top of my health.
But, as I’ve gotten more and more involved in the D-OC over the last (almost!) 4 years, I’ve realized that the D-OC is more than just helping ourselves mentally with our lives with diabetes. In a way, we are the voice of all people living with diabetes. Even the people who aren’t a part of our community. More and more health care professionals are online, reading about the patients that they care for. More newly diagnosed diabetics (or parents of diabetic children) are searching online for information about their disease, and in the process finding our blogs. Blogs about people living with or caring for, people living with diabetes.
With that, comes a great responsibility. Sure, we are allowed to “fail.” We are allowed to have a “bad” A1c, or a bad week of rollercoaster blood sugars. Those are the responsibilities I am talking about. I am just now beginning to understand that it becomes our responsibility to advocate for people with diabetes. It’s our job stand up when we see people misrepresenting diabetes. It’s our job to educate people who don’t understand or who are presenting information about diabetes in a way that isn’t true.
Kelly Kunik famously tells her story about Halle Berry being the reason she started to blog. It was during the whole deal where Halle said she was Type 1 and weaned herself off of insulin so she was now a Type 2. :/ Kelly was so infuriated by this misrepresentation of diabetes and the types of diabetes that she started blogging (and making big wigs cry). And in the process, she has become a fantastically funny addition to the D-OC, and a wonderful (LOUD) advocate for those of us who live every day with diabetes.
During the blogger round table that they had a JDRF Government Day, and throughout the weekend, those of us who weren’t there were able to be a part of the action through Twitter and the hashtag #JDRFGovDay. That really lit a fire in my heart. I feel like I should be doing more. I need to be the one making the phone calls to let people know they are presenting information about diabetes incorrectly. I’m the one who needs to be blogging about the things that will matter to the people who are searching for information about diabetes that isn’t your typical “text book” information.
So, my goal is to see what I can do. What kind of difference can I make? I’m not a technical writer. I don’t “do” science. But I do have a voice. And I can share with people what I read. And I can educate people about Type 1 diabetes and what it’s like to live with diabetes. I want to become voice for people who live every single day with diabetes. I want people to understand that diabetes doesn’t take a vacation. I want to educate.
I’m not quite sure how I’m going to start out. But my pastor preached this Sunday about running toward your fears instead of away from them. So this is my first step. Advocacy has always been something that I’m been afraid to do. So this is one fear I’m going to head right toward. When a door opens, I’m going to take it.
My theory is that I just don’t want to deal with diabetes. Not in a general sense. I deal with diabetes 24 hours a day, seven days a week, 365 days a year (and 366 days in a leap year!). Diabetes, while not always at the forefront of my thoughts, is something that always exists in my life. I don’t like people knowing all the literal ups and downs of living with diabetes because I hate the pity and sad looks I get from people.
So, what do I do? I hide it. I don’t hide my diabetes. People know I’m a diabetic. I don’t have a problem with that. But I hide the bad stuff. Sometimes I think people are under the impression that I have perfect control. But I don’t. I do what I can. I believe I have better control because I have the D-OC. In a totally indirect way, you guys keep me caring about myself and keep me on top of my health.
But, as I’ve gotten more and more involved in the D-OC over the last (almost!) 4 years, I’ve realized that the D-OC is more than just helping ourselves mentally with our lives with diabetes. In a way, we are the voice of all people living with diabetes. Even the people who aren’t a part of our community. More and more health care professionals are online, reading about the patients that they care for. More newly diagnosed diabetics (or parents of diabetic children) are searching online for information about their disease, and in the process finding our blogs. Blogs about people living with or caring for, people living with diabetes.
With that, comes a great responsibility. Sure, we are allowed to “fail.” We are allowed to have a “bad” A1c, or a bad week of rollercoaster blood sugars. Those are the responsibilities I am talking about. I am just now beginning to understand that it becomes our responsibility to advocate for people with diabetes. It’s our job stand up when we see people misrepresenting diabetes. It’s our job to educate people who don’t understand or who are presenting information about diabetes in a way that isn’t true.
Kelly Kunik famously tells her story about Halle Berry being the reason she started to blog. It was during the whole deal where Halle said she was Type 1 and weaned herself off of insulin so she was now a Type 2. :/ Kelly was so infuriated by this misrepresentation of diabetes and the types of diabetes that she started blogging (and making big wigs cry). And in the process, she has become a fantastically funny addition to the D-OC, and a wonderful (LOUD) advocate for those of us who live every day with diabetes.
During the blogger round table that they had a JDRF Government Day, and throughout the weekend, those of us who weren’t there were able to be a part of the action through Twitter and the hashtag #JDRFGovDay. That really lit a fire in my heart. I feel like I should be doing more. I need to be the one making the phone calls to let people know they are presenting information about diabetes incorrectly. I’m the one who needs to be blogging about the things that will matter to the people who are searching for information about diabetes that isn’t your typical “text book” information.
So, my goal is to see what I can do. What kind of difference can I make? I’m not a technical writer. I don’t “do” science. But I do have a voice. And I can share with people what I read. And I can educate people about Type 1 diabetes and what it’s like to live with diabetes. I want to become voice for people who live every single day with diabetes. I want people to understand that diabetes doesn’t take a vacation. I want to educate.
I’m not quite sure how I’m going to start out. But my pastor preached this Sunday about running toward your fears instead of away from them. So this is my first step. Advocacy has always been something that I’m been afraid to do. So this is one fear I’m going to head right toward. When a door opens, I’m going to take it.
Thursday, March 17, 2011
Pretty Awesome
Okay, this entire post is gonna be a disclaimer. The ENTIRE THING. I have never had anyone pay me for anything I posted. If I've ever gotten anything free, I've let you know. I'm not typically an endorser (although if I like something, I'll let you know). I don't blog to get free stuff. I don't blog to get paid (although sometimes I feel like I blog so much I should get paid).
Because I don't typically get stuff sent my way, I feel like I should let you guys know if I am writing about something that's been sent to me.
About a week or so ago I received an e-mail from a lady named Allison who works at a GAP in Cool Springs (which is in Tennessee, if you aren't familiar with the area). She is a leader (I'm pretty sure that's what they call their managers). She sent me a link to a coupon that can be used at GAP, Old Navy, or Banana Republic. It is for 30% off March 17 (that's today!) thru March 20th. But that's not the best part of it. The best part is that 5% of the money spent is going to be donated to JDRF!
It's the time of year when you should be buying clothes for summer anyway, so get out this weekend and take the coupon. You'll be getting an awesome discount, some cool clothes AND benefiting JDRF while you do it.
And let it be known, other than the coupon, I didn't get any kind of compensation for this blog post.
Because I don't typically get stuff sent my way, I feel like I should let you guys know if I am writing about something that's been sent to me.
About a week or so ago I received an e-mail from a lady named Allison who works at a GAP in Cool Springs (which is in Tennessee, if you aren't familiar with the area). She is a leader (I'm pretty sure that's what they call their managers). She sent me a link to a coupon that can be used at GAP, Old Navy, or Banana Republic. It is for 30% off March 17 (that's today!) thru March 20th. But that's not the best part of it. The best part is that 5% of the money spent is going to be donated to JDRF!
It's the time of year when you should be buying clothes for summer anyway, so get out this weekend and take the coupon. You'll be getting an awesome discount, some cool clothes AND benefiting JDRF while you do it.
HERE is the link.
And let it be known, other than the coupon, I didn't get any kind of compensation for this blog post.
Tuesday, March 15, 2011
Being Sick Sucks
Being sick sucks. Bottom line. If you get sick as a “normal” person it sucks, I’m sure. If you get sick with diabetes, it really sucks. I’m typically a fairly healthy person (diabetes aside). I usually don’t get more than a cold a few times per year. In fact, until this winter, I hadn’t been to the doctor for actual sickness since 2007. Yup. You read that year correctly.
But this winter has destroyed that lovely record. Since December, I’ve missed a total of 6 days of work for sickness. I’ve been to the doctor twice. Including this past weekend. Thursday morning I was feeling a little crudy. I thought it was allergies, so I started with the over the counter allergy meds. Friday morning I couldn’t talk. I had coughed so much (and gotten so little sleep) that I already knew that I wasn’t going to be able to work.
I went in for long enough to let my boss know that I couldn’t talk and to be sure to get all my appointments rescheduled, but I left there after half and hour and took off for the doctor’s office. They didn’t do a strep test, but I got antibiotics and cough syrup and headed home to rest.
By Saturday morning, I was pretty darn sure (strep test, or no strep test) that I had strep throat for the first time since I was in high school. Probably about 15 years ago, to be honest. My throat was killing me. I couldn’t talk above a whisper (actually, its Monday afternoon as I’m writing this, and I still can’t talk).
And then the blood sugars. Oh the blood sugars. Saturday about noon I pulled up my pump graph for the past 24 hrs. There wasn’t a single reading below my high marker on my cgms (my high marker is set at 170). Not a single one. I was even running on a temp basal. And it still wasn’t doing any good.
My mom was a saint. I asked her to pick up a couple of things for me at the store and she went above and beyond. I have enough sugar free jello & popsicles to last me for a while. She also kept checking up on me. I know she was worried since I’m living alone again.
Sunday night I thought I might be able to go to work. I couldn’t talk, but I thought I could work on paperwork. But Sunday night was a cough fest again and I got almost no sleep. So Monday was another sick day again. I’ve basically not been out of pajama’s for four days. I’m praying and hoping that Tuesday (the day I have this post planned to go up) is a better day. I really, really, REALLY need to get back to work. It’s hard for me to get caught back up when I miss so much time at work.
It’s times like now that I truly hate having diabetes. I fully believe that if I had a functioning pancreas that I would already be on the mend. But I can’t. Being sick means taking longer to get better. And it sucks. Perhaps I’m having a little pity party for myself because I’m never sick.
Perhaps I just feel crappy and I want to complain a little. But right now, diabetes sucks. And as we like to say on Twitter #duckfiabetes
Monday, March 14, 2011
#JDRFGovDay
Over the weekend a small group of D-bloggers was invited to go to the Nation’s capitol to speak on behalf of our entire community. While I would have LOVED to have been invited, I was very happy with the bloggers that were picked. They are a great representation of our community and I feel proud to say that I can count them among my friends (both those I’ve met and those I haven’t). Also, it would have been bad as I’ve been at home recovering from strep throat since Friday morning ;) (more on that in another post).
One of the great things about the event was that all of the bloggers were tweeting while they were there, so those of us who weren’t there could still ask questions and have a front row seat to what was going on. I followed #jdrfgovday faithfully all day Saturday and Sunday.
There were some amazing topics discussed and some were topics that really needed to be brought to life. But that’s not what this post is about. It’s actually about a tweet that Kerri (@sixuntilme) posted. I believe she was quoting someone who was there. But what that tweet said really had my mind turning. It said “People just don’t understand the dangers and the difficulties of type 1 diabetes.”
Wow. I’ve talked about how it can be hard to explain living with disease to people. But as I was thinking about it today, I kind of looked at it a little bit different. Diabetes has such a bad connotation in every day life. As an adult with T1, people automatically assume you’re a T2. And that diabetes is “your own fault” (which I DON’T believe for either type). I never hesitate to correct people on what type of diabetes I have. But I also make it a point to not complain.
I don’t want people to take pity on me. I don’t want them to think “poor girl” or “how sad” when it comes to me. I like to think of myself as a fairly independent person. I hate asking for help in any area of my life. I don’t want to appear “needy.”
Because of this, I typically play down my life with diabetes. I tend to play it down in my own mind as well. It’s just part of life. I do it. Every day I’m my body’s pancreas. I count carbs, test, bolus, do site changes, make corrections. Its route at this point (after 25 years, it should be!).
I can be low or high. And while I may mention it in passing to someone, I don’t often let them know how badly I feel. Or how frustrated I am. Or how scared I am. Most of the time I don’t even let the online community know these things, although it is easier with you all than it is with anyone else.
Unless you live this life, you can’t really know. I’m so thankful for my friends and family, who understand better than anyone in my “real life.” They are the ones who see me in my weak times. But even with them, I like to protect them. I don’t always let them know. Because why would I want to worry the people I love anymore than I know they already worry about me (I believe the correct term for this is diabetes guilt)?
The truth of the matter is that living with diabetes is HARD. Sure, it’s part of everyday life. But it isn’t easy. It never leaves. It never takes a break. On vacations, diabetes is there, often times screwing it up. Diabetes makes taking a trip to the mall harder. It makes being sick harder. It makes preparing for a wedding harder. It makes planning a family harder. It makes driving for long distances harder. Diabetes means extra steps, and thinking ahead, and over packing, and preparing for every possible circumstance.
Diabetes affects every single aspect of my life. I don’t make it a secret that I stay at my job for the insurance. The things I would love to do are not an option at this point in my life simply because I have to think about diabetes. If I were anyone else (with a functioning pancreas) I would have probably sought a different path a few years ago. But everything that I want to do requires me to either return to school or to risk a job that would have no health insurance. Which, as we all know, can be detrimental to our diabetes health.
Most days diabetes doesn’t rule my life. Most days I integrate it into my life. But on the days it does rule my life (rollercoasters anybody?), I do my best to keep it to myself. But I’m thankful. I’m thankful for my health, I’m thankful for the D-OC, where I know I can always go for support. I’m thankful for my friends and family that support me. I’m thankful for my job that has terrific health insurance.
But the real question is, do I share more with people who are in my life every day? Would sharing my fears and my frustrations do more good? Would it help advocate for diabetes? Should I be sharing more? Educating more? Would it help bring more light to this disease? I think I walk a fine line between wanting people to realize that treating this disease is HARD WORK and wanting them to realize that I don’t need pity, only support.
Perhaps I’m too weak to handle that. I’m not sure. How does an independent person share a part of their life with others that is going to make those people worry about them? I don’t take compliments well. And I don’t take others’ worry well either. Do you share your ups and downs and frustrations with your “real life” friends and family? Do you get pity? How do you deal with it?
One of the great things about the event was that all of the bloggers were tweeting while they were there, so those of us who weren’t there could still ask questions and have a front row seat to what was going on. I followed #jdrfgovday faithfully all day Saturday and Sunday.
There were some amazing topics discussed and some were topics that really needed to be brought to life. But that’s not what this post is about. It’s actually about a tweet that Kerri (@sixuntilme) posted. I believe she was quoting someone who was there. But what that tweet said really had my mind turning. It said “People just don’t understand the dangers and the difficulties of type 1 diabetes.”
Wow. I’ve talked about how it can be hard to explain living with disease to people. But as I was thinking about it today, I kind of looked at it a little bit different. Diabetes has such a bad connotation in every day life. As an adult with T1, people automatically assume you’re a T2. And that diabetes is “your own fault” (which I DON’T believe for either type). I never hesitate to correct people on what type of diabetes I have. But I also make it a point to not complain.
I don’t want people to take pity on me. I don’t want them to think “poor girl” or “how sad” when it comes to me. I like to think of myself as a fairly independent person. I hate asking for help in any area of my life. I don’t want to appear “needy.”
Because of this, I typically play down my life with diabetes. I tend to play it down in my own mind as well. It’s just part of life. I do it. Every day I’m my body’s pancreas. I count carbs, test, bolus, do site changes, make corrections. Its route at this point (after 25 years, it should be!).
I can be low or high. And while I may mention it in passing to someone, I don’t often let them know how badly I feel. Or how frustrated I am. Or how scared I am. Most of the time I don’t even let the online community know these things, although it is easier with you all than it is with anyone else.
Unless you live this life, you can’t really know. I’m so thankful for my friends and family, who understand better than anyone in my “real life.” They are the ones who see me in my weak times. But even with them, I like to protect them. I don’t always let them know. Because why would I want to worry the people I love anymore than I know they already worry about me (I believe the correct term for this is diabetes guilt)?
The truth of the matter is that living with diabetes is HARD. Sure, it’s part of everyday life. But it isn’t easy. It never leaves. It never takes a break. On vacations, diabetes is there, often times screwing it up. Diabetes makes taking a trip to the mall harder. It makes being sick harder. It makes preparing for a wedding harder. It makes planning a family harder. It makes driving for long distances harder. Diabetes means extra steps, and thinking ahead, and over packing, and preparing for every possible circumstance.
Diabetes affects every single aspect of my life. I don’t make it a secret that I stay at my job for the insurance. The things I would love to do are not an option at this point in my life simply because I have to think about diabetes. If I were anyone else (with a functioning pancreas) I would have probably sought a different path a few years ago. But everything that I want to do requires me to either return to school or to risk a job that would have no health insurance. Which, as we all know, can be detrimental to our diabetes health.
Most days diabetes doesn’t rule my life. Most days I integrate it into my life. But on the days it does rule my life (rollercoasters anybody?), I do my best to keep it to myself. But I’m thankful. I’m thankful for my health, I’m thankful for the D-OC, where I know I can always go for support. I’m thankful for my friends and family that support me. I’m thankful for my job that has terrific health insurance.
But the real question is, do I share more with people who are in my life every day? Would sharing my fears and my frustrations do more good? Would it help advocate for diabetes? Should I be sharing more? Educating more? Would it help bring more light to this disease? I think I walk a fine line between wanting people to realize that treating this disease is HARD WORK and wanting them to realize that I don’t need pity, only support.
Perhaps I’m too weak to handle that. I’m not sure. How does an independent person share a part of their life with others that is going to make those people worry about them? I don’t take compliments well. And I don’t take others’ worry well either. Do you share your ups and downs and frustrations with your “real life” friends and family? Do you get pity? How do you deal with it?
Wednesday, March 9, 2011
Diabetes GPS
I am not very OCD about many things, but one of the things that annoys me is if my infusion site for my insulin pump is on a different side of my body than my CGMS sensor site. That’s usually not such a big deal, except when I go out of town for a weekend knowing I’ll need to do a sensor change…and take everything to do the change, except a new sensor.
Because of that and because I had been waiting to hear if my new insurance policy will cover my sensors (it’s the same company, but a different policy, so some things might not be covered), I decided to take a week off from having my CGMS sensor in week before last.
By the end of day 2, I knew I was going to hate every second of it. Because I’m so used to having the sensor, I have gotten out of the habit of testing as regularly. I still check around 6-8 times a day, but not as often as I should (especially when I’m at work and I tend to get busy and forget to test).
When I don’t test regularly, I basically don’t have a clue what’s going on with my blood sugars. And because I was not testing as regularly, AND I didn’t have a sensor in, I have dealt with some crazy highs and lows in the past week. I had several lows, but managed to catch most of them before they go too terribly bad. I also had more highs than I’d like to admit. One day I nearly hit 400. And as we all know, that left me feeling horribly ill and tired.
Having CGMS is like having a map of your blood sugars. Or even better, having GPS navigation. It tells you where you are going (maybe not how to get there…but still, it’s better than nothing) so you know what to expect. When you have CGMS, going without it is like taking off on a cross country trip. With no map AND no sense of direction. You might think you’re headed for California and end up in Wisconsin.
Sure, sometimes you can feel your highs and lows, but if you have been a diabetic for a long time like I have, often the ability of sense your highs and lows is dampened. Basically, your body gets so used to the highs and lows that it stops giving you the signs. If I’m lucky, I can still catch my highs and lows before they get too extreme, but sometimes I’ll be 52 and not even feel it. Once, I was 38 and still functioning normally. Other times a 69 will hit me so hard I’m left reeling.
That’s why I need my road map/GPS. I need my CGMS to keep me where I need to be. After 25 years of living with diabetes, my body has already suffered years of irreparable damage. And by keeping my blood sugars in range to the best of my ability, my body suffers less. This means fewer complications. Which means a longer, healthier life (are you listening insurance companies?? You should be).
By early last week, I put a new sensor in (leaving me 1 left). I needed to get my map back. I needed my control back. Mid-week a dear friend of mine in Nashville sent me a few extra sensors to tide me over until I heard something from my insurance company. Ironically, the next day I got my shipping confirmation from MiniMed that they were sending a new box of sensors (which means my insurance company said “okay”).
I got my ability to care for myself back. But how many people get turned down for CGMS, or have to fight it every step of the way? This post didn’t start out to be one talking about insurance. But it turned out that way. Sometimes I think my posts turn into something totally different for a reason. Maybe someone, somewhere will read this and realize how important it is to have good technology AND for people to have reasonable access to said technology.
There was life before CGMS. Just like there was life before the Internet. And cell phones. And cable TV. But I’d be willing to bet that people wouldn’t want to go back to a life without those technologies. I just hope and pray I never have to go back to life pre-CGMS and pre-pump.
Because of that and because I had been waiting to hear if my new insurance policy will cover my sensors (it’s the same company, but a different policy, so some things might not be covered), I decided to take a week off from having my CGMS sensor in week before last.
By the end of day 2, I knew I was going to hate every second of it. Because I’m so used to having the sensor, I have gotten out of the habit of testing as regularly. I still check around 6-8 times a day, but not as often as I should (especially when I’m at work and I tend to get busy and forget to test).
When I don’t test regularly, I basically don’t have a clue what’s going on with my blood sugars. And because I was not testing as regularly, AND I didn’t have a sensor in, I have dealt with some crazy highs and lows in the past week. I had several lows, but managed to catch most of them before they go too terribly bad. I also had more highs than I’d like to admit. One day I nearly hit 400. And as we all know, that left me feeling horribly ill and tired.
Having CGMS is like having a map of your blood sugars. Or even better, having GPS navigation. It tells you where you are going (maybe not how to get there…but still, it’s better than nothing) so you know what to expect. When you have CGMS, going without it is like taking off on a cross country trip. With no map AND no sense of direction. You might think you’re headed for California and end up in Wisconsin.
Sure, sometimes you can feel your highs and lows, but if you have been a diabetic for a long time like I have, often the ability of sense your highs and lows is dampened. Basically, your body gets so used to the highs and lows that it stops giving you the signs. If I’m lucky, I can still catch my highs and lows before they get too extreme, but sometimes I’ll be 52 and not even feel it. Once, I was 38 and still functioning normally. Other times a 69 will hit me so hard I’m left reeling.
That’s why I need my road map/GPS. I need my CGMS to keep me where I need to be. After 25 years of living with diabetes, my body has already suffered years of irreparable damage. And by keeping my blood sugars in range to the best of my ability, my body suffers less. This means fewer complications. Which means a longer, healthier life (are you listening insurance companies?? You should be).
By early last week, I put a new sensor in (leaving me 1 left). I needed to get my map back. I needed my control back. Mid-week a dear friend of mine in Nashville sent me a few extra sensors to tide me over until I heard something from my insurance company. Ironically, the next day I got my shipping confirmation from MiniMed that they were sending a new box of sensors (which means my insurance company said “okay”).
I got my ability to care for myself back. But how many people get turned down for CGMS, or have to fight it every step of the way? This post didn’t start out to be one talking about insurance. But it turned out that way. Sometimes I think my posts turn into something totally different for a reason. Maybe someone, somewhere will read this and realize how important it is to have good technology AND for people to have reasonable access to said technology.
There was life before CGMS. Just like there was life before the Internet. And cell phones. And cable TV. But I’d be willing to bet that people wouldn’t want to go back to a life without those technologies. I just hope and pray I never have to go back to life pre-CGMS and pre-pump.
Monday, March 7, 2011
Out Dated Test Strips
A couple of weeks ago, one of my T2 friends brought me several boxes of test strips that were about to go out of date. She doesn't test as often as her script is for, so sometimes her strips go bad before she can use them. If she catches them before they are outdated, she brings them to me, since I use them much quicker.
The date on these boxes was 02-2011. It's officially March now. Technically they are outdated and I still have a full box and a half of a box left to go. That's 150 strips that I really hate to throw out. Does anyone know any stats on accuracy beyond the expiration date? Are they still safe to use? Are they still accurate (or as accurate as any strip gets, since we all know accuracy in test strips leaves much to be desired)?
Have you ever used expired strips? Have you ever had a bad experience using expired strips? Give me your opinion, D-OC. What do I do? Toss them (or send them to Lee Ann for art!)? Or keep using them? If you think I should keep using them, how long should I keep it up?
The date on these boxes was 02-2011. It's officially March now. Technically they are outdated and I still have a full box and a half of a box left to go. That's 150 strips that I really hate to throw out. Does anyone know any stats on accuracy beyond the expiration date? Are they still safe to use? Are they still accurate (or as accurate as any strip gets, since we all know accuracy in test strips leaves much to be desired)?
Have you ever used expired strips? Have you ever had a bad experience using expired strips? Give me your opinion, D-OC. What do I do? Toss them (or send them to Lee Ann for art!)? Or keep using them? If you think I should keep using them, how long should I keep it up?
Wednesday, March 2, 2011
Meeting Crystal
About two weeks ago, Crystal Bowersox (last season’s runner up on American Idol, and fellow T1 diabetic) tweeted that she would be performing at the Bluebird Café in Nashville on February 26th. Knowing that the Bluebird is a very small venue, I immediately went to their website and saw that tickets were only $10 (plus a food/drink minimum). With that price & that size of venue, I knew I’d do whatever I could to be there.
The reservations became available last Monday and I stalked the internet site (continually clicking refresh) until I could reserve a table for two. I wasn’t sure who would be going with me, but I wasn’t going to go alone, and I was sure I’d find someone to go with me. Strangely enough, I only had 1 person (locally) respond to my request for someone to attend with me. Everyone seemed to be busy or too far away.
I’d never been to the Bluebird Café before last Saturday night. For those of you who aren’t familiar with the Bluebird, it is basically a singer/songwriter showcase. It’s very small and has a “listening room” type policy. Basically, it’s the person, and their guitar (or other instrument of choice) performing their music. It’s very well known in the music industry. It has a ton of history and some amazing performances have happened there.
From the first time I heard Crystal perform on American Idol, I loved her voice. Finding out that she was a Type 1 diabetic made me love her even more. There’s just something about the d-connection that makes you root for a person. During her Idol run, I posted two open letters to her. I’m sure she never read them, but it was a way to get my thoughts out.
Amy T from Diabetes Mine ended up getting an incredible interview with her. Even then, I knew I’d love to meet Crystal. If for nothing more than to tell her that I think she’s amazing. And Saturday night I ended up standing in the same room, less than 6 feet from her.
First off, diabetes aside, Crystal (and her husband, Brian Walker, who also performed) is amazingly talented. She’s also amazingly funny and good natured. She came right out and said she didn’t have a set list, so part way through the performance, she basically started taking suggestions from the audience. She did a great mix of songs from her album (which you should GO BUY!), songs that are her’s but weren’t on the album, and covers of songs (some of which she performed on American Idol).
She talked about her first time performing at the Grand Ole Opry, which was totally impromptu the night before. She talked about being star struck by Vince Gill. It was kind of like listening to one of your friends telling you a cool story about something that happened to them. Crystal Bowersox gives down-to-earth a whole new meaning.
But, the diabetes was there too. I could see her diabetes tattoo on her wrist while she played her guitar. And before she came up on stage, she and her husband were sitting in the corner, not far from me. I couldn’t see them because of the way the wall was, but I heard the familiar “shunk” of a lancet device. I wasn’t listening for it. But I heard it. It’s a sound you can’t mistake when you’ve been hearing that sound for so many years.
Afterwards, Crystal stayed to sign autographs and take pictures. I tried not to go completely “12 year old stalker” on her. I tried to be normal. But I did tell her that the D-OC loves her. And I asked to see her tattoo (it’s beautiful by the way). I just wish I’d had enough sense about me to ask to get a picture of it.
I also managed to get her into trouble with her husband. :) I asked if she had a CGM. She told me she did, but didn't have on a sensor at the moment. I told her I didn't either (apparently we were both taking a break). But Brian was standing behind her and heard her say that and he said, "You don't have a sensor in? Why not?" :) She did ask me if I liked mine. I told her I loved it and told her about putting them on my thighs instead of my stomach (less brusing for me). Maybe I actually shared something with her that could help? That would be pretty awesome.
Meeting Crystal was pretty amazing. She’s an extremely talented songwriter, an amazing muscian and singer, and a very strong woman living with diabetes. I’m glad to say that I was able to meet her. Thanks, Crystal, for being so kind to all of your fans. I know it meant a lot to me, as I’m sure it did the others who were there.
The reservations became available last Monday and I stalked the internet site (continually clicking refresh) until I could reserve a table for two. I wasn’t sure who would be going with me, but I wasn’t going to go alone, and I was sure I’d find someone to go with me. Strangely enough, I only had 1 person (locally) respond to my request for someone to attend with me. Everyone seemed to be busy or too far away.
I’d never been to the Bluebird Café before last Saturday night. For those of you who aren’t familiar with the Bluebird, it is basically a singer/songwriter showcase. It’s very small and has a “listening room” type policy. Basically, it’s the person, and their guitar (or other instrument of choice) performing their music. It’s very well known in the music industry. It has a ton of history and some amazing performances have happened there.
From the first time I heard Crystal perform on American Idol, I loved her voice. Finding out that she was a Type 1 diabetic made me love her even more. There’s just something about the d-connection that makes you root for a person. During her Idol run, I posted two open letters to her. I’m sure she never read them, but it was a way to get my thoughts out.
Amy T from Diabetes Mine ended up getting an incredible interview with her. Even then, I knew I’d love to meet Crystal. If for nothing more than to tell her that I think she’s amazing. And Saturday night I ended up standing in the same room, less than 6 feet from her.
First off, diabetes aside, Crystal (and her husband, Brian Walker, who also performed) is amazingly talented. She’s also amazingly funny and good natured. She came right out and said she didn’t have a set list, so part way through the performance, she basically started taking suggestions from the audience. She did a great mix of songs from her album (which you should GO BUY!), songs that are her’s but weren’t on the album, and covers of songs (some of which she performed on American Idol).
She talked about her first time performing at the Grand Ole Opry, which was totally impromptu the night before. She talked about being star struck by Vince Gill. It was kind of like listening to one of your friends telling you a cool story about something that happened to them. Crystal Bowersox gives down-to-earth a whole new meaning.
But, the diabetes was there too. I could see her diabetes tattoo on her wrist while she played her guitar. And before she came up on stage, she and her husband were sitting in the corner, not far from me. I couldn’t see them because of the way the wall was, but I heard the familiar “shunk” of a lancet device. I wasn’t listening for it. But I heard it. It’s a sound you can’t mistake when you’ve been hearing that sound for so many years.
Afterwards, Crystal stayed to sign autographs and take pictures. I tried not to go completely “12 year old stalker” on her. I tried to be normal. But I did tell her that the D-OC loves her. And I asked to see her tattoo (it’s beautiful by the way). I just wish I’d had enough sense about me to ask to get a picture of it.
I also managed to get her into trouble with her husband. :) I asked if she had a CGM. She told me she did, but didn't have on a sensor at the moment. I told her I didn't either (apparently we were both taking a break). But Brian was standing behind her and heard her say that and he said, "You don't have a sensor in? Why not?" :) She did ask me if I liked mine. I told her I loved it and told her about putting them on my thighs instead of my stomach (less brusing for me). Maybe I actually shared something with her that could help? That would be pretty awesome.
Meeting Crystal was pretty amazing. She’s an extremely talented songwriter, an amazing muscian and singer, and a very strong woman living with diabetes. I’m glad to say that I was able to meet her. Thanks, Crystal, for being so kind to all of your fans. I know it meant a lot to me, as I’m sure it did the others who were there.
Tuesday, March 1, 2011
Diabetes in Strange Places
Me and my theatre craziness. You’d think with a blog dedicated to theatre, I’d STOP writing about theatre related stuff here. Really, I don’t mean to. But in the past month or so diabetes and theatre have been intersecting in my life like crazy.
On Friday night I went to a production of Camp Rock: The Musical at Cumberland County Playhouse (if you’re interested in my review click here). I took my sister and her boyfriend, mostly cause I didn’t want to go alone and I thought that my sister would enjoy the show (turns out both of them did).
We sat third row, center, so our seats were very close to the stage and very well placed. When I’m watching shows I have a tendency to pick out ensemble members and watch them. They aren’t always a huge part of the show, but seeing their actions and facial expressions can be so fun and give you a slight bit of insight into a character that often has no name or story.
During this particular production I was watching a couple of the kids. And then I saw it. Right before the intermission, I saw the clear tubing at her waist. And in my head I know that a sound pack doesn’t have clear wiring. I followed that clear tubing with my eyes, right to the pink MiniMed insulin pump hanging from her waist.
Being a totally cool person with diabetes, I freaked out! Oh my! I couldn’t believe it (not like I don’t meet diabetics on a fairly regular basis or anything… LOL). After that I couldn’t help but watch that little girl. I also knew I was going to have to introduce myself after the show.
I found Lindsey and her dad standing out in the lobby of the Playhouse. All I did was take my pump out of my pocket and show it to her. Insta-connection, right D-OC? :) I introduced myself to her dad and found out her brother was also in the show (and I’d seen him in other productions at the Playhouse).
On Friday night I went to a production of Camp Rock: The Musical at Cumberland County Playhouse (if you’re interested in my review click here). I took my sister and her boyfriend, mostly cause I didn’t want to go alone and I thought that my sister would enjoy the show (turns out both of them did).
We sat third row, center, so our seats were very close to the stage and very well placed. When I’m watching shows I have a tendency to pick out ensemble members and watch them. They aren’t always a huge part of the show, but seeing their actions and facial expressions can be so fun and give you a slight bit of insight into a character that often has no name or story.
During this particular production I was watching a couple of the kids. And then I saw it. Right before the intermission, I saw the clear tubing at her waist. And in my head I know that a sound pack doesn’t have clear wiring. I followed that clear tubing with my eyes, right to the pink MiniMed insulin pump hanging from her waist.
Being a totally cool person with diabetes, I freaked out! Oh my! I couldn’t believe it (not like I don’t meet diabetics on a fairly regular basis or anything… LOL). After that I couldn’t help but watch that little girl. I also knew I was going to have to introduce myself after the show.
I found Lindsey and her dad standing out in the lobby of the Playhouse. All I did was take my pump out of my pocket and show it to her. Insta-connection, right D-OC? :) I introduced myself to her dad and found out her brother was also in the show (and I’d seen him in other productions at the Playhouse).
We talked diabetes for a few minutes and I got a totally cool D-pictures of us with our pumps. And I made some theater/diabetes friends. It’s fun to know that we can have an instant connection with another person, just by sharing the common bond of diabetes.
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