Diabetes: A Sibling's View

This blog post came to me from a very dear friend of mine that we'll call "Lola." Lola and I have been friends for over ten years and she is a amazing person. For a pretty decent amount of time after I met her, I had no idea that her older brother had diabetes. She never mentioned it. I think I actually found out when I went to her house (she still lived with her parents at the time) and her mother mentioned it to me when I had to give an injection.

Lola has never been one to push me about how I care for my diabetes. She listens when I complain and never gives unsolicited advice. She follows all of the proper diabetes etiquette rules. Maybe it's because her brother has diabetes, or just because she's such an amazing friend. Either way, she rocks. This is her view of have a sibling with diabetes:


I remember the day my brother was diagnosed with diabetes, I was four years old, he was 14. He was skinny as a rail, loved surfing, and was just getting ready to enter high school, and hadn’t been feeling well for a while. The lead up to it is fuzzy I remember lots of trips to the doctor, lots of worry around, my parents had just gotten divorced (my Dad is his Step-Dad and there was physical abuse involved) and we were living in a motor home in the church parking lot in San Diego. It was 1985 and my teenage brother did not take the news well. I remember him crying (a very rare thing) and my Mom looking scared and holding him. I remember watching them learn to use those BD needles with the bright orange caps on plump oranges. My mom broke a needle off in one of them, not an encouraging sign. I remember gashed fingers from lancet lessons. I remember my Mom trying to get enough skin on his stomach to pinch together for the needle, and looks of pain as he learned this whole process he would have to do for his entire life just to stay alive. But mostly I remember being scarred, scarred of losing a brother I loved VERY much.

My brother is one of the most compassionate loving people I have ever known. He will give you the shirt off his back and his last bite of food, and won’t even make you ask. He is intuitive to other peoples feeling and problems and getting a hug from him is the warmest happiest thing I can think of. I think he is, partly because of this, very prone to depression. I think there is a very special reason he is on this planet because after he was diagnosed, an already troubled boy became rebellious, angry, and self-destructive. He began to drink and use drugs. His dream to be a pilot was gone because the FAA and military won’t allow diabetics to fly. He moved out when he was 16 and failed to graduate with his class from high school. He did make up his class in summer school and got his diploma, but I think his hopelessness just increased. He moved around a lot, and became a construction worker. Occasionally we would live in the same city, and then I remember emergency trips to the hospital for diabetic comas and Ketoacidosis. We were told he would lose his feet by the time he was 25, that he wouldn’t live to see 30. He refused to take care of himself and lived as though he didn’t have a chronic illness. His health care coverage was spotty, at best, and at one point he was homeless and living under a bridge in New Mexico. What do you do as a parent or a sibling when your adult D-sib or child refuses to take care of themselves? Yet he is alive. He is going to turn 40 next year. To me he is the REAL boy who lived. Harry Potter has nothing on my brother and Diabetes makes Voldemort look like a fussy little girl with a bad nose job. There is a reason he is alive, there is a reason you all are alive, there is a reason you fight everyday and test and do math that would make some of my college students cry, just to stay alive. Find that reason and go after it, whether it is advocating, or researching, or fundraising, or getting married and living a beautiful life filled with happiness and love.

I also remember when we first started hearing about this thing called an insulin pump. I thoroughly believe it has saved my brother’s life. As someone who has a hard time admitting he has an illness, it allows him to live life a bit more normally. Now as opposed to shooting up in the middle of a restaurant before a meal, he just does some mental math (probably SWAG-ing more than is healthy) and clicks some buttons on an unobtrusive device. I am not saying they are for everyone, but for my brother, and for me, the sister who doesn’t want to lose him, they are a little Engineering miracle. Now if only I could get him to test more. :P

Justice & Synsyre

A great D-OC blogger and wonderful D-mama, Alexis has been a fantastic person to get to know. Both of her children are superheros and I love reading her blog, Justice's Misbehaving Pancreas. Alexis never beats around the bush and always tells you exactly what she thinks (a noble quality, in my opinion!), which in turn makes her a FANTASTIC advocate for people with diabetes.


 I asked her if her children, Justice (T1 since 2008) and Synsyre would like to give their views on diabetes for the "Your Voice" project and she was kind enough to send me something from both boys. So here is diabetes: Justice & Synsyre-style


Justice- Age 8

Hey everybody I'm Justice. Being a diabetic is really hard for me cause well, first when your diagnosed you have no idea what your parents and doctors are talking about. They can start panicking when you first woke up in the hospital, when that happened to me I was very upset cause it was my birthday vacation. I was in the hospital for a week and then when I got out I had to do shots and stuff. I had no idea how so my parents helped me out. When I had to get my insulin I always needed shots. 2 years later I got a pump! Then a new pump! My new pump is great and all but when I'm low I feel like jello, I'm like in pain. When I'm high I get really mad, and I don't like that. I get mad at my brother, my mom, my dad and I don't like that. Well we have for supplies when I'm low is skittles, sweet tarts, smarties, and glucose tabs. And if I'm really low we have glucagon. Its a shot. Then if I'm high I bolus, maybe like a unit or two. And we just figure it out. When I go down its all good. The people that help me most are my parents and my brother. Mostly my mom and brother cause my dad works. When I'm low my brother gets me candy and helps me out and that's really a good thing cause I need my right hand/left hand man. He helps me and I love him. Being a diabetic when you first get it its pretty hard. But once you've had it for 2 or 3 years, you're set to go. You'll be a diabetic pro. I feel emotional because when I'm low I feel sad cause I can't get to do that much stuff. With my family they're really helpful that's what makes diabetes pretty easy, cause I have a family that helps me. And that's it.



Synsyre - Age 6
Hi I'm Synsyre, Justice my oldest brother I hate that his Diabetes. What I like is that I can still go in the pool, and Justice can too. Cause his pump is waterproof. And I also like that we can handle the lows for him and when we do we got smarties, tabs, and what else? And other stuff is how we can handle lows, we have a lot of stuff with sugar. I feel bad for him cause he pricks his fingers, he has lows, sometimes he nauseous, he goes to sleep and doesn't know anyone's gonna prick his fingers and sometimes it wakes him up. If we are playing a game and our mom says check his sugar, I don't like that we have to stop cause we are doing very good at it. I feel very very very bad that he has to prick his fingers every day, or when we play he has to check his Dexcom. And when we play a game and he's high or something he has to give himself a bolus I don't like it. I hate when he's low in our pool cause then we have to come out. Diabetes makes me feel like if he was a person I'd pick him give him wedgie and throw him out of the window. I hate it. I feel bad for him very bad.

Things Were Simpler Then

I was diagnosed with diabetes on February 5, 1986. I was 4 years old. The home blood sugar meter had only been available for a few years. They were still the size of a brick, and horribly complicated to use. A finger prick was done by a lancet device that we in the D-OC affectionately *cough*sarcasm*cough* call “the guillotine.”

Insulin delivery was by needle (and thankfully, not by glass needles that need to be sharpened….I’m not that old yet) only. We had no clue how to count carbs. Only that we were supposed to stay away from sugar and that we needed to eat three meals and three snacks per day, following the exchange program (anyone remember the red exchange book??).

We tested four times per day. Breakfast, lunch, supper, and before bed. We only checked other times if I was feeling bad. When I was first diagnosed, I only took one shot per day. Within a year or so I was taking 2 shots per day; one at breakfast and one at supper. There were no sliding scales or insulin to carb ratios. Cake was only an indulgent few bites on holidays and your birthday.

My mother never did middle of the night testing, though I know she slept with one eye open. She could hear me having a low (whining, thrashing, etc.) in her sleep no matter what. I’m sure my blood sugar ran higher than anyone would want their child running nowadays, but it was a protection for us.

Over the past several weeks I’ve been thinking about diabetes burnout. I think a large part of the burnout that I am dealing with comes because diabetes is such an all the time thing. I have a CGM that lets me know if I’m too high or low (or even if I’m rising or falling too quickly). I test numerous times per day. I rarely sleep all night without an alarm happening. Though I don’t do middle of the night checks on myself very often anymore (thank you GOD for the CGMS), I end up checking in the night from alarms more often than I’d care to admit.

Sure, I can eat sweets more often, skip a meal if I’m not hungry, and not worry as much about the timing of my meals anymore. I can test my blood sugar in 5 seconds, I have an insulin pump that allows me only a couple of needle insertions a week. My control is better, which I know will ward off long term complications.

But at what cost? I wouldn’t trade my diabetes technology for anything (other than BETTER technology). But sometimes the continual grind of diabetes can be so frustrating. At least when I was a kid, diabetes didn’t rear its ugly head more than a few times per day (meals, injections, and the occasional low). Now diabetes is always around.

I know this post sounds like I’m complaining. I’m not. I’m eternally thankful for all of the strides in diabetes care and all of the amazing technology that I have at my fingertips (no pun intended), it’s just an observation about how different the care of diabetes is today than it was 25 years ago. And my thoughts on how that “micro management” can lead to diabetes burnout.

The Motherload

Sherry Neergaard and I "met" on TuDiabetes several years ago. We were both members of the Tennessee Diabetics group. Then, a little over a year ago, an Adults with Type 1 diabetes support group formed in the Nashville area. I knew that it was going to be a drive for me (I live several hours from Nashville), but I wanted to try to be a part of the group if I could.

At the first meeting, Sherry was there. She is such a sweet soul and a kind person. Though I rarely make the Adult T1 support group anymore, anytime I'm in Nashville Sherry and I try to get together. I can promise you that you will be blessed to ever meet someone with a heart as big as hers.

The last time we met for lunch (after my disastrous endo appointment) Sherry discussed that she'd like to blog, but didn't feel like she had the time. I offered then to let her guest post on my blog. And that, along with some other outside influences, eventually led to the "Your Voice" project.

Okay, so I’m usually cool with my diabetes.  I mean, after all, at least it waited to sock me until I was 43…until after college, babies, well, you get the idea.  I’m even glad for it on occasion.  Take last week for example.  I have a really close friend whose 13 year old son was diagnosed with Type 1.  When I got that frantic, tear-filled call from her while in the PICU, I was really glad to have some help to offer.  So I’m usually okay with this disease.  But sometimes…..

This morning, however, I was ready to squeeze the living daylights out of diabetes.  I mean, really!  I was just giving my baby a bath when the water looked a little wavier than it should have been.  When I tested in at 56, I got stinking MAD!  WHY can’t I even give my BABY a bath without the big D demanding its share of the action?  Give me a BREAK!!!  Pu-lease!!

Okay, so maybe I’m not being fair.  My “baby” is 11 years old and, at 5 feet tall and weighing 120 pounds, he is unable to move a muscle.  He’s a special child, severely affected by cerebral palsy.  When he’s naked, wet and in the tub, he’s nearly as big as me.  I guess giving him a bath would challenge anyone.  Also,  I know better than to strip all the beds, do four loads of laundry, mop two rooms of floors and drive 1 ½ hours taking my dog to the vet AND give my son  a bath, all on 15 grams of breakfast carb.  But, heck, it was only 11 a.m.!! 

 

I just wanted to get the little feller all clean and sassy before we have to drive the hour and a half back to get the dog, drop off 4 bags at Goodwill, run to the post office, finish the floors, do 5 more loads of laundry, make supper, get ready to square dance for two hours tonight and then hurry home to prepare for a 6 hour First Aid and CPR training tomorrow.  Oh, and get my son ready for bed….a hour long process that would pale a ghost. 

So why can’t I go at lightning speed?  After all, my life depends on an insulin pump.  I run on a AAA battery!

I just don’t want to be different.  I get so annoyed when I’m interrupted from life by this monster.  I give it plenty of time and thought. Why doesn’t it just let me alone???  How can I lose weight, or ever get a decent meal if I have to parcel out food to fix lows like I was a squirrel hiding nuts before the first frost?    I don’t want to fix grilled cheese sandwiches at 11 p.m. because I was too annoyed to eat supper last night and went to bed low….and got lower…..and my CGM wouldn’t shut up.  There are times I just want to forget about diabetes….you know….take a break from it.  But I can’t.  It’s too selfish.

Oh, well.  Elijah is clean.  I’m over my low. No floors are getting done since I’m writing this. But whatever.  Diabetes.  It’s a Motherload.


Sheery Neergaard lives in the Nashville area. She was (mis)diagnosed with T2 diabetes in 2005, and rediagnosed with T1 (adult onset) diabetes in 2006. Married to her best friend Daryl for 27 years, she is mother to college student Corey and special needs son Elijah. Daryl and Sherry are houseparents at Tennessee Baptist Children's Home.

In her free time (!), Sherry loves squaredancing, gardening, sewing, playing handbells, writing, and most any kinds of craft. She is a former elementary school teacher and hopes to return to school to become a registered nurse...in her words "just for fun."

Diabetes: A Meter's Point of View

Shortly after I posted my first request for guest bloggers for the then untitled "Your Voice" project, a facebook friend, Jessica Munoz, contacted me with a great post. She was actually my first reply.

I'd like to thank Jessica for sharing her post and her time. :) Comment and leave her some D-OC love!


I wear a sticker that states “It’s just a number” but I can tell by her face it’s much more than that. Had I known how much I would be cried on, yelled at and occasionally thrown I would have switched part places at the factory and became a digital watch instead. Or perhaps I would have aspired to be a meter model; flashing those lovely 95’s and 113’s in the fancy pages of magazines.

But alas, my days are filled with 400’s and 43’s flashing HIGH and LOW. I wait patiently after the LOW wishing she would come back and test again. I shout “I’ll give you a better number this time!” in the quietness of my dark zippered case eager to not see the flashing lights of the ambulance reflect off of my scratched screen once again.

She always comes back to me, thankfully, she always comes back.

Today she comes back to me with a renewed sense of hope, fresh test strips in hand. She has received the encouragement she needs to look forward to another day. An improved A1C, an “I know it’s hard but you can do this” from Dr. B, a hug and a “We love you” from her sweet boys.

The countdown begins; she is holding her breath…3, 2, 1…126! I get the smile I’ve been longing to see. It is just a number sweet girl, remember that. Keep coming back to me and we will work through this together.

Jessica was diagnosed with Type 1 Diabetes in February 2000. She's been on the pumping for 10 years and lives in sunny San Diego with her husband and two boys.

Calling all Non-bloggers!

Currently I am on a diabetes blogging hiatus. Mostly because I have no inspiration right now for various reasons. But, I don't want to leave my readers hanging, so I'm starting up a little project. I'd very much like to share the stories of my non-blogging readers.

If you have diabetes, care for someone with diabetes, are a sibling, relative, friend of someone with diabetes, and you have a story to share, e-mail me at beth2027@yahoo.com . I'd like to share your story with my readers. Because even though you may think you have nothing to say, everyone has a story to tell about diabetes. :)

I may not get to post all of them, but contact me and we'll see what I can get done. I'd really, really, really like it if there were some people who are not traditionally connected to diabetes (i.e. has it themselves, or is the primary caregiver of someone with diabetes). I'll take anyone, but I'd like to hear how your parent's diagnosis, or your best friend's low blood sugar while you were shopping, or your grandchild's first overnight stay with you after diagnosis went.

If you read this and you are a blogger, but know someone who might want to share their story who maybe doesn't read my blog, pass the info along.

There are a lot of ways that one can be affected by diabetes. I'd like for more people to realize in how many ways diabetes effects the people around the actual person living with the disease!

I Was Right

Tuesday was my appointment with the nurse practitioner at my endo's office. I knew I was way overdue for an appointment. I also knew I have not been taking care of my self like I should be. My blogging has been very honest about my diabetes burn-out/depression, along with the fact that I know my slacking in diabetes care is my fault and something I am going to have to fix.

The day came my A1c was the first thing they did. The number itself was one that a lot of people would work really hard for and be thrilled with. But for me, it was horrible. It was higher than it had been in over five years. And I knew it was coming. I was praying that it wasn't quite that high, but it was still a punch in the gut to know that I am back to a range where I personally do not feel comfortable.

My nurse practitioner is wonderful. She actually told me that she was happy with that number and that I shouldn't worry, but if I wanted to get it back down that it wouldn't take a lot of work. And she's right. It could be back where I wanted it in a month or so, if I buckle down and start paying attention to what I'm doing.

The great thing about my endo's office, and the people that I see there, are that they listen to me. They are supportive, and understand that even though a number, or a goal might be okay for some people, that I want to work harder and I tend to hold myself to a different standard than most people.

Even after reviewing all my pump and meter downloads, the NP and I talked about the inconsistency of the highs and lows and I was upfront with her about why I believed that they were that way. There's no pattern to my highs and lows because I have been slacking off. We talked a little about my diabetes burn-out, my frequent travel, and my depression. At then end of the conversation she said "I don't think we need to change any of your pump settings." And she was right. I told her that I needed that number so that I could kick myself into gear and she agreed with me, but in the same breath, told me not to stress so much.

It's nice having a great health care team. One that will support me and help me with my goals, but don't feel the need to berate me or tell me all the things I need to be doing differently. I left the office feeling down. Disappointed in myself. But at the same time, having that tangible number has given me the information I need to start making changes. I know what I am, so I know where I need to go to get back where I want to be. So even though I was upset with my number, I have hope and knowledge that I can fix it.

I meet with my endo in October. Let's see what will happen between now and then. I know one thing is for sure: I CAN DO THIS!

When Sensors Go Wrong

I'll admit that I love having CGMS. But it has it's down sides as well. One of the things I hate is that the needles are so long. Another thing is that they aren't more accurate. Over time, I've found the best place for me to insert my sensor is on my thighs. My stomach just can't handle it. But with inserting them on my thighs, I've had some scar tissue build up in the past several years. As a result, sometimes my sensors don't want to go in as easily as they should.

Last week I was putting in a new sensor when I go the typical "thunk" that I get when I know I'm going to have to either take the needle (that's part way in) out and reinsert it, or that I'm going to have to push it in the rest of the way by hand. Either way, I HATE it when that happens.

The weird thing about this specific time when I was inserting was that I just felt like something was off with the needle. When I looked, I saw this:

I know it can be a little hard to see, but basically, the sensor that is encased in the needle for insertion purposes was sticking out slightly at the tip. Basically, it was bent out over the edge of the needle, making it impossible to finish the insertion process. Luckily I got a new sensor out and was able to insert it easily, but I'd never had anything like that happen before in all my years of CGMS usage.

Anyone else had this experience??

Misinformation

After years of years of listening to misinformation about diabetes (all types) and dealing with the misconceptions of people who don’t have or care for someone who has diabetes, I shouldn’t be surprised when I hear or read another piece of false information regarding this disease that I’ve lived with for twenty-five years. But, I am. Almost every time. The shock may not be as much, but it’s still there.
This past week a (I assume) well-meaning individual wrote an article about his disturbance that a fundraiser for diabetes research would be held as an ice cream social. He continued on by stating several statistics relating to diabetes and then stating a series of examples of people living healthier lives after changing their eating habits when they were diagnosed with diabetes.

Mr. Wendell Fowler wrote that offering a person with diabetes ice cream was on the same level as offering an alcoholic a drink. I’m here to take Mr. Fowler’s misinformation and break it down into fact & fiction for you. And then explain to you the truth about living with diabetes.
Mr. Fowler stated that 1 in 10 people in America have diabetes. Truth. And that number is growing significantly. He also states the fact that the CDC estimates that 1 in 3 people will have diabetes by the year 2050. Also a truth.

Here’s where the misinformation can begin. There are different types of diabetes. Diagnoses of both types are growing. No one knows why. Type 2 diabetes, most often (but not always) diagnosed in adults is attributed to an inability to make enough insulin or for that insulin to properly be processed by the body. In some cases, losing weight and changing your lifestyle (food, exercise, etc.) can let you control diabetes without medications. In other cases (especially in those with insulin resistance) the body just cannot process the insulin it produces. There is not always a reason why. Some people with Type 2 diabetes do not have a weight problem at all. In cases like that, how would losing weight help? It wouldn’t.

Another thing to look at is the fact that not all people who are overweight have Type 2 diabetes. That in itself should tell you that there are genetics and other outside factors that play a part in diabetes developing in a person. So why would it be fair to lay blame on a person for developing a disease? It’s not. People diagnosed with diabetes (of any type) do not wish for this. We don’t ask for it. And we certainly wouldn’t want it if we weren’t handed it on the big ol’ platter of crazy called life.

The second thing that must be pointed out is that this specific fundraiser that Mr. Fowler spoke of was not a fundraiser for Type 2 diabetes. It was a fundraiser for Type 1 diabetes. Type 1 is most often (but not always) diagnosed in children. It is an auto-immune disease. Basically your body turns on itself and attacks the insulin producing beta cells in your pancreas. The end result is a body that produces no insulin. At all.

There is no reason that can be found for why the body turns on itself. Genetics, environmental things, a combination of both. There’s nothing that can explain it. When I was 4 years old, my body revolted. I ended up in the hospital and ended up with this disease that has been with me ever since. It’s not going anywhere. But I did NOT ask for it.

Although I am slightly overweight, my weight has nothing to do with my Type 1 diabetes. Even if I was firmly in my appropriate weight bracket, I’d still have diabetes. I’d still be hooked to an insulin pump twenty-four hours a day. I’d still have to count every single gram of carbohydrate that goes into my mouth.

A healthy lifestyle is important for all people. It doesn’t matter if they have diabetes and it doesn’t matter what type of diabetes they have. Moderation should be taught at home and in life. Healthy food choices are important for all areas of health, and it does bother me that Americans tend to make very poor food choices. But sugar is not what caused my diabetes (or the diabetes of anyone else, T1 or T2). So excuse me if I want to take my moderation and go out and have an ice cream sundae. Better yet, excuse me while I go get my pint of New York Super Fudge Chunk Ben & Jerry’s ice cream. No worries, I’m not going to eat it all. Just a bite or three before I stick it back in my freezer until my next sweet craving hits.

Mr. Fowler, I hope you read this. If not, I hope you read one of the many other posts written by those of us who are sick of blame and guilt. We didn’t ask for diabetes and we shouldn’t be punished by people who feel like we should never be allowed to have ice cream again. So next time you see a person in an ice cream parlor that takes an injection, or gets out an insulin pump to bolus, don’t judge. Turn the other way. Unless you want to learn. And then ask. I’m sure people will be glad to give you a crash course in life with diabetes while you both eat your ice cream.

A Good Night's Sleep

One of the greatest things about having a CGMS is the ability to have super tight control over your blood sugars. Tight control (without CGMS) can lead to horrible lows that are often not caught in a timely manner. Having CGMS gives you the ability to catch those lows (and highs) before they get too bad and makes the overall control easier.

But, I have also noticed some down sides of having CGMS. I beep ALL THE TIME. Like constantly. Sure, it's good for knowing what's going on, but can happen at the most inconvenient times. One thing that tends to happen to me a lot is beeping in the middle of the night. I have weird episodes at night. Sometimes I will spike in the middle of the night for no apparent reason. Other times I will drop for no apparent reason. Making the CGMS a good thing. But causing me some serious sleep deprivation at other times.

Lately I've been having a lot of trouble sleeping. Not related to the beeping CGMS or diabetes. But trouble sleeping nontheless. However, beeping doesn't help the situation. And last night, my sensor finally died so I took it off to charge overnight. Part of me is scared to sleep without it, but there was nothing I could do because it was so late and a sensor would not have had time to calibrate before I went to bed.

I slept without the sensor on all night long. And I don't think I moved at all. I slept fantastically. I'm not sure if it was because I was so exhausted, or because I didn't have the beeping to wake me up. It was a wonderful night's sleep. But I woke up this morning with a blood sugar of 65. :/

So is it worth it? Do sleep better and risk getting sick or worse in my sleep? I don't think so. But sometimes I wish I could just take a break from the beeping.

Search Term Fun

Okay... everyone kind of wants to know what brings people to their blog. What are people searching for when they stuble across my own personal journal of my diabetes life?

Here are my top 5 for the month:

1.)  winner every minute

Winner every minute, huh? I'd kind of like it if there were a winner every minute on my blog. Sadly, it's not so. 

2.) sick

Hmmm. Not sure how I feel about someone finding my blog by searching "sick."

3.) country girl diabetic

Yay! Someone actually searched for ME!! :)

4.) - every day, every hour, every minute ... is new

This is exactly how it was typed. Strange. Very strange. 

5.) being sick sucks

Yes. Being sick does suck. I actually wrote a blog post titled "Being Sick Sucks," so that's probably why this search is picking up.

So, now that I know how people are finding me... it makes me wonder if they're actually reading! :D



Diabetes is MY Disease

I have an appointment at my endocrinologist’s office in just a couple of weeks. I’m not seeing her. My appointment with her couldn’t be made until October. But I am seeing her nurse practitioner. I don’t have a problem with that. I like them both and they are both very good at what they do. I worry though. I am worried about how to handle the fact that I haven’t been doing what I should be. I have no idea what my A1c is. I am terrified that it’s going to be at a level that I haven’t seen in years.
But every time I go, it always comes down to the same question: “What are you going to do to fix it?” And that question is for me. They never come right out and say that, and they always offer to help me with anything I need. But the truth of the matter is that my lax diabetes care right now isn’t because of messed up basal rates or insulin to carb ratios. It’s due to the fact that I haven’t been on top of things like I should be and I know it. And they are going to ask what’s been going on, and I’m going to have to be honest.

Truthfully, I’m hoping that this appointment will kick me back into gear. Sometimes that external motivation is what I need. Emotionally, I’m doing better than I was a week or so ago. Oftentimes when I write about what I’m dealing with it helps me to process it and deal with it. Now I just have to attack the other areas. I need to make myself goals and I need to stick to them. I need to stop feeling so out of control with my life and my diabetes. I need to stop depending so much on my CGMS readings, and depending more on actual blood glucose tests.

It’s all one day at a time. Waking up and being able to say, “I’m going to do the best I can this morning.” And then saying at lunchtime, “I’m going to do the best that I can for the rest of the day.” At this point, I don’t even want to try to do a whole day at a time. And that’s okay. I know, ultimately, that I want to have the best diabetes control possible. And I know I’m the only one that can do that. Diabetes is my doctor’s disease for those 20 minutes I’m in her office. Diabetes is my disease every other second of every other day. Diabetes isn’t a doctor’s disease. It’s the patient’s disease. If I want to have a good, long, healthy life, I have to be the one to make it that way.

M-I-C-K-E-Y

It's been a while since I've done a cake post for you guys. I'm not really in the mood to write a d-related post today, so I thought I'd bring you some of my "sweeter" and happier posts by posting pictures from my godson's 3rd birthday party, including the cake I made him.

This cake was one of my favorites that I've ever gotten to do!

I love Mickey! No matter how much I complain about MM Clubhouse. :)

As for the theme... let's just say I've seen enough episodes of Mickey Mouse Clubhouse that I can hotdog dance with the best of 'em. :)

I didn't make these, but aren't they cute?? 

He was a little freaked out with everyone singing to him. :)

Burn Out at the Perfect Time?

It's funny that last Wednesday was the official start to the You Can Do This Project. Why is it funny? Oh, well, it's funny because I just realized today that I'm smack dab in the middle of a new episode of diabetes burn out/depression. Honestly, I don't talk about it much because I don't consider it a huge deal in my life. Throughout college and up until a couple of years ago, I would have periods of mild depression that I dealt with every year. Almost like clockwork, sometime between January and March. I've never seen a therapist, so I can't say I've ever been diagnosed with depression, but you don't have to have someone tell you, once you figure out what it is. Usually with those episodes of depression came more pronounced episodes of diabetes burn out.

The past few years I've not really had to deal with it. I'm not sure why. Most of the time I didn't even realize that it didn't come until I was somewhere into summer and thought "Oh, I didn't get sad this year." The past several months for me have been crazy busy. I've been traveling a lot. There's been a lot going on with my job. I've been stressed. I won't lie. But, like a trooper, I've kept on going.

But these last couple of weeks I've just been tired. All the time. I've not been sleeping well. I've been fighting crazy highs and lows with my blood sugars (more highs than anything). It's become a vicious cycle. I'm not sure it the crazy stress and travel brought on the crazy blood sugars and then I got lax because I was tired of the crazy blood sugars. Or if I just got lax because of the crazy stress and travel, and that brought on the crazy blood sugars.

I notice that I'm not counting carbs as accurately. I'm not dosing insulin as accurately. I'm depending more on my CGMS than on actual blood sugar tests. I'm just tired. I've been going to bed crazy early for several nights this week. And then I can't sleep all way through the night. I want to do nothing but read all the time (this tends to be my escape). I don't want to do housework or go to the grocery store. And it's making me crazy.

While I sat in church tonight it hit me that I'm going through another time of depression. And what makes it so funny to me is that I just posted my own video for the You Can Do This Project. All about how diabetes is hard, but that we can get through it.

I thought about just doing what I always do: praying, reading blogs, writing in a journal, and waiting for it to pass. Because it always does. But this time, instead of writing in a journal I chose to put in on my blog. I did it in hopes that it will help me to get motivated. I know I can do this. It just feels like I can't or don't want to some days. Today is one of those days. Tomorrow might be too. But I know that it will pass because I have great support online and off. I don't like being sad. I don't like being burned out on my diabetes care. But it happens. And knowing that I have friends out there that deal with it as well, helps me get through the days.

If you're a prayer, remember me in your prayers. If not, just remember me. :) I'll be fine. I'm strong. For now, I'm off to watch another round of You Can Do This videos. Because if anyone has dealt with depression and burn out, it's the people in this community. I love you guys.

You Can Do This Video

Yesterday was the start to the You Can Do This Project. I finally got my video uploaded last night. First off I'd like to thank Kim for this wonderful idea. Secondly, I'd like to encourage you to go check out the other submissions to the You Can Do This Project.

And lastly, I'd also like to note some things that I didn't talk about in my video. We all deal with depression at one point or another for one reason or another. I've gone through the not testing and the high A1c's and the skipping injections like many others living with diabetes have also gone through. If you're having a hard time, don't hesitate to contact someone, anyone, in the diabetes online community. Many of us have our email address on our blog. There will always be someone around to talk to you and to let you talk.

How Diabetes Care is Like Bacon

If that title didn't catch the attention of the D-OC, I give up. :) Most of you probably realize how crazy we are about bacon in the D-OC. Bacon and cupcakes. And sprinkles. And Sprinkles. Anyway, bacon is kind of a fantastical food. Add it to almost anything and it gets better.

Sunday morning I was cooking breakfast. I typically don't cook bacon because it's messy and makes my house smell like bacon for days, but I had family in town and I wanted to be a good host and decided to cook up some bacon. While I was standing there, I realized that I didn't know how my cousin liked his bacon. Bacon is a curious food. Some people like it crisp. Some like it burned. Some like it floppy. Some like it chewy. Some like it somewhere in between. Everyone likes their bacon differently. It's still bacon. It still serves the same purpose no matter how it's cooked. But everyone likes it cooked differently.

There I stood when the phrase "your diabetes may vary" popped into my head. :) And I immediately changed it to "your bacon may vary." And just like bacon, everyone's diabetes care is a little different. Every has food effect them differently. Everyone likes a different A1c. Each person has a different medicine or regimen that they take to care for their diabetes. Some people are comfortable when their blood sugar is 170. Others want it lower. Basically, it varies. You have to do what's comfortable for you and your health care provider.

Your diabetes care is different than mine. Just like I'm guessing your like your bacon cooked differently from mine. So, remember that "your diabetes may vary" just like "your bacon may vary." I think it's important to remember in a large community like ours. We have to cheer on and encourage, while remembering not to hold everyone to the same standards that we hold ourselves.

Opting Out

Sometime between the last time I flew (around a year ago) and last week, Nashville airport got full body scanners. I know people have all sorts of issues with these scanners. People complain for many different reasons. To be honest, I don't really like the idea of them, but the way they effect me has more to do with my diabetes than with anything else. Truth be known, if it weren't for my insulin pump and cgm, I'd probably go through the full body scanners, even though I don't like the idea of them, just to speed things up.
But, sadly, Medtronic says NOT to take an insulin pump or cgm through a full body scanner. Here is the exact quote from their page:

•Medtronic has conducted official testing on the effects of the full body scanners at airports with Medtronic medical devices and have found that some scanners may include x-ray. To avoid removing your devices, you may request an alternative screening process. If you choose to go through an airport body scanner, you must remove your insulin pump and CGM (sensor and transmitter). Do not send your devices through the x-ray machine as an alternative.

So, even though I was running later than I like (let's not even talk about Nashville traffic during rush hour, okay?), I saw those scanners and immediately let the TSA agents know that I couldn't go through them. They asked if I was opting out. I said, yes, I was. But in a way, I don't feel like I was really opting out. I feel like I didn't have another choice.

I waited in the little clear box while they found a TSA agent to do the pat down. She was very nice, and I explained to her about what my insulin pump and CGM were and where my CGM was located (I have the fear of them touching it and then freaking out and making me do a strip search!!). She explained how she was going to do the pat down. It was over fairly quickly, but it was much more... thorough... than the last time I had to do a pat down.

Then they made me touch my pump and swabbed my hands for explosives (I've dealt with that before). And I was on my way. I don't know that I felt violated, per se. I mean, I didn't exactly enjoy it, but I didn't feel threatened or like I was sexually assaulted or anything. In fact, I didn't think a whole lot about the whole deal until I got home and my dad asked me about it.

I'm not saying that other people who have had horrible experiences are over reacting. Because the place that I see the most problems is in the inconsistency of how things like this are done. When I flew back, the other airport had regular metal detectors and I just walked right though and didn't even tell them about my pump or CGM. And if security is that different in different airports, you know that the way pat downs are done, depending on which TSA agent you get, are likely to vary just as much.

I guess I just wanted to share my experience. And my wish that I had another option. Besides the full body scanner OR a very "touchy" pat down.

We Have a Winner!

So, I did the whole "pull a winner out of the hat" thing for my give away. First, I went through and took out all the double entries and all the people who said they didn't want to be entered. Then I wrote down all the other names on slips of paper and folded them up. Then I mixed them all up in a plastic bowl.

Then I pulled out one.

And this is who we got:

Dr. P is a newly diagnosed person with diabetes who blogs at Being Black and Diagnosed with Diabetes.  She has only been a part of the "d club" since February of this year, so I think this is a nice little welcome gift. Go over and visit her blog and leave a comment. :)

Also, since there was no way to contact you on your blog, Dr. P, you will have to email me your contact info so I can get your Stick Me Designs bag in the mail to you. I hope you enjoy it!

Life for a Child Video

When I saw the exhibit on the discovery of insulin at the New York Historical Society back in October there was a short movie playing as part of the exhibit. I watched it all. The video was titled Life for a Child and was a look at what children in third world countries have to go through in order to get the very basic in diabetes care: insulin. It was moving, appalling, and touching.

Just the other day I got an e-mail that notified me that you can actually watch this film for FREE on Hulu by going HERE or that you can buy it ($9.99) or rent (3 day rental $2.99) it by visiting Amazon HERE. I've also put a the video (from Hulu) at the bottom of this post. I suggest you watch it if you haven't had the chance to do so yet. You may look differently at you own health and I can assure you that you will be thankful for whatever access to diabetes supplies that you may have.

The video is about half an hour long. Enjoy.



Also, tonight at midnight CST is the last chance to enter for a chance to win a FREE Stick Me Designs bag. Go to my post for more details. :)

You Can Do This

While I was out of town this week, Kim from Texting My Pancreas announced the launch of a project that I think is going to change lives. We all know that diabetes is hard to live with. No matter what type of diabetes you (or your loved one) had, it's never easy. Sure, there are good days. But there are bad days as well. And not matter the type of day, it NEVER goes away. The title of my blog says it all... it's Every Day, Every Hour, Every Minute.

But there is support, love, and strength to be found. These things make it easier. The fact that I know that I'm not alone.... that is priceless. And in order to let others know that they aren't alone, Kim launched the You Can Do This project. Record yourself. Share with others. You aren't alone and neither are they. All the details on the project can be found HERE. Who knows, your video may touch a life in ways that you could never imagine.

I'm in the process of getting my own video together and it will be up as soon as I can get it finished. Join us. Let this be a cry of hope for people who are newly diagnosed as well as for those who are burned out and frustrated. Diabetes may never leave, but neither does the support coming from those in the online community. Below is the launch video. I encourage you to watch (you might need some tissues).

Giveaway: Stick Me Designs

A couple of weeks ago the lovely Rickina, creator and owner of Stick Me Designs, posted on facebook about wanting to give us bloggers a chance to test and blog about her product. I jumped at the chance because I've honestly been wanting a Stick Me bag for a while, but haven't ever gotten around to getting one.

Stick Me Designs is a company that makes meter bags that are NOT your plain old black bag. They are beautiful. Because honestly, who wants to have that boring old black bag? Not me. I've had a black meter case for 25 years now. And we all know how boring they can get.

Rickina sent me the Aqua Deco print of one of her cases. She also told me I could either keep it or have a give away. It came in a cute package and when I got it out, it was amazing! The fabric seems to be pretty durable and there are a million and one zipper pockets, and elastic bands. I put some of my things in it to give you all an idea of what it looks like.

Basically, I was able to fit in my meter, lancet device, 2 bottles of strips, insulin, emergency batteries, glucose tabs, a spare infusion set and reservoir, along with all the other supplies needed for a full pump change. I also put in my glucagon kit. And it all fit! In fact, one of the pockets on the outside of the case is lined in a cold pack material, which is where I stored my insulin.

I loved this case. But I decided to part with it. Here are my reasons, it's kind of big (obviously, to fit all of that stuff) and I would have an issue fitting it into my purse easily. I would probably get a lot of use out of it on vacations and on short trips, but not the every day use that I think a student carrying a backpack or a parent of a child with diabetes might be able to get out of it. Because it was given to me, I didn't feel right keeping it if I wasn't going to use it all the time.

So instead, I'm giving all of you a chance at winning this awesome Stick Me Designs bag. All you have to do it comment on this post before midnight CST on Monday, June 6th. I'll do a random drawing for the winner. But even if you don't win, I highly suggest you go check out Rickina's site. She has some beautiful and functional products that you should check out.

*disclaimer: This product was sent to me free of charge in exchange for me blogging about it. I was not told what to blog, only to be honest in my blog, which I have done.*

Another D Meet-Up

I love my meet ups with diabetes peeps. For the past 3 years, every May I've made a trip to NYC. It seems to be the place to be to get a good concentration of people from the D-OC. Every time I meet new people and get to visit with people that have become my friends both online, and IRL.

This year was no different. Thanks, as always, to Allison for putting this deal together (that girl is the ultimate organizer!).

There is nothing in the world like sitting at a table full of people wearing pumps, giving injections, and testing blood sugars. It makes me smile.

I'd tell you again how much I love the D-OC, but I think I say it so much that it's starting to get old. Either way, you guys are wonderful. And thanks for taking time out of your day to come hang out with me!

What We've Learned

Today's final post is going to be short and sweet. I'm currently getting ready to head into New York City for vacation (and hopefully some amazing meet-ups!). This post is supposed to be about what I've learned. Basically I've learned one very important thing about myself & my diabetes since I found the D-OC. That thing:

I am NOT ALONE!

Saturday Snapshots

Awesome Things

Diabetes has brought me so many wonderful things. The most awesome thing is the D-OC, without a doubt. I've met so many wonderful people in person and on the internet. You've given me the chance to express myself. You've shared your stories with me. I've guest blogged. I've had amazing diabetes meet-ups. I've  had the chance to join the Diabetes Advocates.

But diabetes has give me other things as well. Diabetes taught me to take care of my health. It taught me to be responsible from a very young age. It taught me compassion. It taught me the importance of health insurance. Diabetes taught me to share myself with others. Diabetes taught me the importance of juice boxes and to be thankful for a night of uninterrupted sleep. Diabetes has taught me how great it is to find a box of band-aid dots (not the silly mixed boxes). And that when you find juice boxes with 14 grams of carbs, you should buy them all.

Diabetes, in spite of all of the bad parts, had brought some of the most wonderful things into my life. And that makes me thankful.

10 Thing I Hate About You, Diabetes

Along the vein of one of my favorite movies of all times, 10 Things I Hate About You (R.I.P. Heath Ledger), I write today's post. It's not the best sounding in the world, and in truth, it's slightly more than 10 things, but there were slightly more than 10 things in the movie poem as well (count 'em!).

10 Things I Hate About You, Diabetes

I hate the way you sneak up on me and the way you make me bleed.

I hate the way you interrupt my life, I hate it that you’re there.

I hate your stupid highs and lows and the way they mess with my mind.

I hate it when you make me sick, even when it’s a bad time.

I hate the infusion site changes and the needles and the pain.

I hate it when you make me tired, even more so when you make me cry.

I hate it that you’re always in my thoughts and the fact that you always come first.

But mostly I hate that you’ll never be gone. Not even close. Not even a little bit. Not even at all.

. 

Wild Card Day - My First Vlog

I picked a Wild Card topic for today. I decided to vlog. This is my first vlog and was actually recorded a few weeks ago, right after my four year blog-aversary. But I couldn't get it to upload to YouTube, so it's a little late. But Diabetes Blog Week is the perfect opportunity to present my very first vlog.

All I ask is that you turn the volume all the way up (I've not quite figured out sound) and don't laugh at me too much. :)

Letter Writing Day

Dear Younger Self,

You’re young now. Life is carefree, for the most part. High school is scary, but you’ll make it. Don’t let those popular kids make you feel bad about yourself. Most of them will end up pregnant before they make it out of high school. Or they’ll end up on drugs.

Take some chances. Life isn’t nearly as black and white as you sometimes think it is. Remember that there’s a big world outside of your hometown. You’ve not seen it yet. But you will. And you’ll enjoy it. Pick a career path that will lead you away from home, not back home. Home is nice. But there is so much you can do if you’ll just broaden your horizons.

Know that there are others with diabetes out there. You don’t know them yet. But you will. Seek them out. Having someone who understand will make your world a better place and open you up to opportunities that you can not even begin to imagine. Diabetes can be rough sometimes, but don’t ignore it. Test more often. And don’t be so scared of an insulin pump. It will make your life a thousand times easier.

You like to play it safe. I know you well. Just a tip, sometimes safe isn’t always the best path to take. Push yourself. Do things you think you can’t. And don’t ever let diabetes hold you back.

When you’re in college, don’t stop going to the doctor. Test, test, test. Once a month is not often enough. And don’t stop giving yourself all of your insulin. It’s damaging. Sure, you want to be like everyone else (who doesn’t?), but you’re causing your body damage. And since I know you want to live a long and healthy life, you need to remember that a 12.1 A1c isn’t going to get you long and healthy. The sooner you get it under control, the better off you’ll be.

Most of all, remember to find yourself. It’s important to learn who you are while you’re young so you can decide what you want out of life. Your friends are wonderful, but you don’t have to be just like them. You can be yourself. Just like the great big eclectic mess that you are. And that’s just fine.

Signed,

Your Future Self

Admiring Our Differences

Today’s topic for Diabetes Blog Week really starts us off the right way. Admiring our differences. Wow. Diabetes is one word, but there are so many different types and so many bloggers have different relationships to diabetes. I had to think so hard about who I wanted to talk about today. I’ve learned so much from all of you.

But the one that seems to hit closest to home for me are the blogs written by parents that have children living with diabetes. I’ve had diabetes for almost as long as I can remember. I don’t know what it’s like to live without diabetes.

I know how much work and effort I put into my own care each and every day. I know how frustrating it can be when I do everything right and the diabetes gods still don’t smile upon me. Those unexplained highs and lows.

But something I rarely, until the D-OC that is, thought about was my parents and their relationship with diabetes through me. I don’t have children of my own, but I have a mother’s heart. And I can’t begin to imagine one of my own children having diabetes.

The worry that every parent feels naturally has to be compounded a hundred fold. Maybe even a thousand fold. When I read the parent blogs it makes me realize, just a tiny bit what my mom and dad went through with me. The sleepless nights. The hospital trips. How hard they tried to just let me be a kid in spite of diabetes sometimes ruling our lives.
When I was a kid, people would tell me how brave I was to test my blood sugar and give myself shots. Looking back I hope those same people told my parents how brave they were. Because they were more brave than I ever was. If anything, I followed their lead. I was brave because they were brave.

Parent blogs make me thankful that I’m the one with diabetes, and that I’m not the one raising a child with diabetes. Although I’m sure I could do it with grace by mimicking those parents online and my own parents.

To all of the parents out there raising a child with diabetes, thank you. Thank you for doing your best. Thank you for your sleepless nights. Thank you for worrying about us. Thank you for all the stress you endure. Thank you for doing everything you can to make our lives as normal as possible. Thank you for helping us to understand that a number is just a number (it’ll be better next time). And most of all, thank you for loving us.

To My Mom

Sunday is Mother's Day. I love my mom every single day of the year. I think I love her more every single day I think. But this year holds a little bit more of a special meaning to me. And it's all because of a post written about a week ago by Hallie from The Princess and the Pump. At the beginning of May Hallie and her husband J had a terrifying experience with their Princess, Sweet Pea. She wrote about it in a post called The Scariest Night of My Life. When I read this post, I cried. I cried tears for Hallie and her husband. I cried tears for my mom and dad.

I know, beyond the shadow of a doubt that I put both of my parents though similarly terrifying experiences through the years. But I never really thought about how it affected them. Though my dad did some of my care, my mom was my primary care giver, especially when it came to diabetes.

Thank you Mom. I can’t tell you in any amount of words or blog posts how much you mean to me and how much I love you. But here are some of the things that I need to thank you for.

Thank you for the sleepless nights.

Thank you for the times you worried.

Thank you for the countless prayers you’ve prayed for me.

Thank you for letting me be a kid.

Thank you for the doctor visits and the subsequent buying of a troll to add to my hideously large collection.

Thank you for always reminding me, “You’d better take care of your diabetes or it will take care of you.” :)

Thank you for always loving me, even when I was impossible.

Thank you for each and every time you put what I wanted before anything that you wanted.

Thank you. I love you.

Frustrated Rant

I apologize for this depressing post ahead of time. But I'm feeling it a lot right now and need to get it out. I don't like to talk about the negative part of living with diabetes very often. Truth of the matter is, I avoid discussing some areas of living with diabetes like the plague. Because some of the negatives of living with diabetes make me feel like I'm in a cage with no way out.

From the time I was a small child I understood that diabetes cost a lot of money. When I was first diagnosed, meters ran in the hundreds of dollars (no free meters here!). I remember when losing a meter was a HUGE deal. And I did lose a few.

And although I had a fairly normal, stable upbringing, I thought about running away once. When I was about 8 or 9, I think. And I remember my thought process about it. I knew what I needed to take; toys, clothes, food...and insulin. I even got smart enough to realize if I waited until my mom got my prescription refilled that I'd have the most amount of insulin to take with me.

Then it occurred to me that I couldn't stay gone forever (isn't the the point of running away?) because once the insulin ran out, I'd have no way or no money to get any more. Diabetes foiled my plans. It also made me realize, even more than I already did, that the answer to me living a semi-healthy life was to having health insurance.

I was quite a bit older before I realized that getting health insurance was harder than it seemed. I couldn't just buy a policy on myself. I couldn't work for a company that made me pay for my own. I think I was in middle school or high school when I finally realized that I'd have to work for a big company in order to go in under a "group policy" to get my health insurance.

As a college student this wasn't really an issue for me. I knew that I was going to be a teacher. And working for a school system offered great insurance. No problems, right? Yeah. Sure. Turns out that even though I loved children and the act of teaching children, teaching in the public school system wasn't really for me. There is too much going on that doesn't have anything to do with teaching (I still gladly teach my Sunday school class and adore children).

So I ended up working for state government. Still great health insurance, even though it isn't exactly my dream job. But the longer I'm with my job, the more I want to be doing something else. I am thankful for my job. I'm not miserable (most of the time). But it's not my life's passion.

The problem that arises is that most of the things I want to do require either A) more schooling, or B) being self-employed. Both of those end up with me leaving my job and losing my health insurance. I'd love it if I had a "significant other" that could carry insurance on me while I went back to school. But I don't. Also, almost anything that I'd want to do requires self-employment. And as we have all learned after diabetes entered our lives, getting insurance when you are a diabetic is IMPOSSIBLE or way, way more money than anyone can afford (unless they're rich, which I'm not).

Basically, I feel like I'm running into a corner or a wall over and over again. Frustrating, yes. Depressing, yes. I can live with the normal ups and downs of diabetes every day. I can deal with the fact that I'm probably going to have to deal with this disease for the rest of my life. I've been doing these things for most of my life already. But the fact that diabetes, in some ways, seems to be keeping me from what I want to do with my life frustrates me beyond belief.

I don't want diabetes to have that much control over me. But diabetes doesn't seem to be happy with dictating when I eat and sleep. And when I'm feeling well and when I'm not. And sometimes even what clothes I wear (dresses, girls??). Diabetes seems to even want to dictate what I do for a living.