Thursday, May 31, 2012

Hemoglobin Variants and A1c Tests

What's your A1c? It's a question I've heard many times from people in the DOC. The A1c is a blood test that shows how much glucose has been circulating in our blood for the past three months.

Technically speaking...

The A1C test measures the amount of glycated hemoglobin in the blood, which indicates average blood glucose levels over the preceding 2 to 3 months. Also called glycated hemoglobin or glycohemoglobin, the A1C test is based on the addition of glucose to hemoglobin over the typical 120-day life span of a red blood cell. Formation of glycated proteins is proportional to the concentration of glucose in the blood. The A1C test helps gauge risk of long-term complications; studies have demonstrated substantial reductions in long-term complications of diabetes with lowering of A1C. --- National Diabetes Information Clearinghouse

Obviously the A1c is a valuable test. Unfortunately I have never had a valid one. My doctors have tried getting my A1c, but the answers are always wrong, because I have a hemoglobin variant.

 Approximately 7% of the world's population carries a hemoglobin (Hb) variant. In the United States the most common variant is called HbAS. It is a genetic marker for a disease called sickle cell anemia. I do not have sickle cell disease, but I do carry the gene or trait. If I married someone who also had the gene for sickle cell anemia we would have a 1 in 4 chance of passing on the disease to our child.

For the most part, having HbAS is no big deal. Except for one thing: HbA1c testing doesn't work because I don't have Hb hemoglobin. My red blood cells don't live 120 days. "Studies that have measured Hb S RBC survival... demonstrating that the lifespan of RBCs in Hb S trait is approximately 93 days compared to 120 days in hematologically normal persons." Since my red blood cells only live 93 days, and the test assumes they live 120 days, a standard A1c test is inaccurate.

About one in 12 African Americans has sickle cell trait. About one in 100 Hispanic Americans/Latinos has sickle cell
trait. It and other hemoglobin variants are distributed throughout the world. If you have the gene for sickle cell anemia, or know you have any kind of hemoglobin variant, please inform your doctor. Your A1c test results may be invalid. You may not be getting the right treatment for your diabetes.

My medical team are trying to figure out how to accurately measure my A1c. When they figure out how, I'll let you know.

Close Encounters

Close Encounters of The Doorknob Kind

It was inevitable. I've been trying hard to keep my pump tubing tucked under my shirt, but I am still me. Wow did that ever hurt! But, apart from the set change gusher and the close encounter of the doorknob kind, I still love my pump.

One thing I like about using a pump is it keeps a record of every bolus. More than once I have sat down to eat and wondered, "Wait, did I remember my insulin?" I always was afraid of giving myself two mealtime injections. Now I can check my pump and look at the time of the last bolus. Having one less thing to remember is a huge relief.  Diabetes didn't change me into someone else. I'm still just as absentminded. Now I can be absentminded and safe at the same time.

Also, this is my 100th Post! YAY! When I started blogging in January I wasn't sure if I would like it. I wasn't sure if anyone would read it, either. Nearly 8,000 page views later, I'm humbled and happy. Thanks everyone for visiting my little spot in the blogosphere. All of you have blessed my life.

My life has changed a lot since January. I've met some of the nicest people both online and in person. I've learned a great deal about managing diabetes. I have gained confidence. I can handle having diabetes and MG. I can do this!  Just as soon as I unwind my pump tubing from the doorknob.

Tuesday, May 29, 2012

Irony Much?

This afternoon I went to the clinic to learn more about my pump. I've been using the basic functions for the past two weeks. Today Donna Murphy (who is AWESOME!) taught me about something called a Combo Bolus.

I wrote about my problems eating pizza. Due to the protein and fat content, pizza is digested slowly. It out lasted my insulin injections and sent me high hours later. Today I learned how to give myself some of my insulin at the beginning of the meal and some over the next several hours. We also tweaked my overnight insulin so maybe, just maybe, I can wake up with a fasting blood sugar in the 90's.

It was a positive visit and I learned a lot. On my way out of the clinic I saw a basket of lollypops. Ooh! Yummy! I choose a green apple one. I slurped on it in the car as I drove home. When I got in the driveway Dexter the Dexcom alerted me to a rapid rise in blood sugar.

What? I went inside and tested. 167. How can my blood sugar be 167? It was 112 when I left the endocrinology clinic. I didn't eat anything, did I?

Wait a sec...  The lollypop I got from the endocrinology office spiked my blood sugar! Irony much?

FYI, Saf-T-Pop's have 11 grams of carbs.
FYI Part 2, Unless it says SUGAR-FREE on the label, it ain't.
FYI Part 3, The Combo Bolus is amazing. Five hours after eating a pepperoni and sausage pizza my blood sugar is 110. How cool is that?

Monday, May 28, 2012

No News Is Good News

Push the buttonLast week on our weekly #DSMA chat we talked about diabetes and depression. They seem to go together. I know that the care and feeding of MG and diabetes consumes a lot of my energy. Sometimes these problems threaten to take over my life and crowd out the things I want to be doing.

XPU has simplified how I get insulin into my body. It hasn't changed the wobbly feeling of an oncoming low blood sugar. Or the headache from a rapid high. Both of these things happen, usually when I would much rather pay attention to something else. For me, chronic illnesses are frustrating. Daily low grade frustration over something I don't want and can't change makes me feel depressed.

Since I cannot fix MG or diabetes I decided to pay attention to things I can change. As I sorted through I asked myself two questions:
  1. What in my life is having a negative impact on me? 
  2. How can I change it?

Friday, May 25, 2012

Pumped about my pump

It's been almost two weeks since I started using my pump. I'm stunned how quickly it became part of my life. I thought I'd feel weird being attached to a tube, or that the pump would be annoying. Instead I can't feel it at all. The pump is lightweight and just stays in my pocket. At night I zip my pump inside a stuffed ladybug. I set it right next to my hip and fall asleep. I can roll over on it and I don't wake up. I was worried about that when I started pumping.

I have woken up with lines on my arm. The tubing makes impressions in my skin. They go away quickly. Before I started pumping my only experience being connected to a tube were IV's. IV's aren't comfortable. My veins are scarred inside from way too much chemo. My fault. I was an idiot. I refused a port until I destroyed my veins. IV's hurt and I was worried the pump would be uncomfortable. It's not. It's about as uncomfortable as a hair ribbon. Even when I roll over on it it doesn't pull or wake me up.

I have yet to have a close encounter with a doorknob or a drawer handle. I think it's because my pump is brand new I'm being super careful. Maybe being super careful will become a habit?

Um... no. I'm still me. Absentminded as ever and feeling fine.

Wednesday, May 23, 2012

Stress Relief

Since I can't switch off MG or diabetes, I am working on finding things that help me cope. The biggest stress reliever I've found is walking in our local forest preserves. Right here in the middle of suburbia there are dozens of forest preserves to visit. My husband and I go for walks almost every day. We always bring our weimaraner April with us.

 Sometimes we hike for three hours. Sometimes we only walk for 20 minutes around a small lake. But, we go out in the fresh air almost daily, even in the winter. It's become a treasured part of our day. The walks lower my stress level, and lower my blood sugar. It's the kind of slow exercise that doesn't make MG worse. Plus there are always benches where I can sit down if I have to. Spending time in the forest preserve gives me a chance to just stop worrying about the future and be present in the now.

Tuesday, May 22, 2012

First Week With Insulin Pump

XPU and I made it through our first week together. When I first got my pump I was half excited and half terrified. What would pumping be like? Would I be OK with having a tube connected to me all the time? Would it hurt? So many questions ran through my mind. I was nervous when I put my first set in. I didn't know if I was doing it right, even though the pump trainer and CDE were right there next to me. It felt awkward and I fumbled my way through

Thursday I did my first set change. I pulled my set off and a rush of blood came out. I had a little wad of toilet paper standing by in case I bled. I needed ten paper towels to get it to stop bleeding. Fortunately my pump trainer told me about gushers. So did people in the DOC. I can't say I was prepared for it, but at least I was warned. Gushers happen sometimes. I was just lucky enough to get one on my first try.

Sunday, May 20, 2012

D-Blog Week #7 -- Diabetes Hero

Today's topic: Let’s end our week on a high note and blog about our “Diabetes Hero”.

I have several diabetes heroes. If you have diabetes, or love someone with diabetes, and you blog about your life and experiences, you are my hero. I learned so much from reading blogs. I didn't even know what a Dexcom was until I read about it on your blogs. Now I have a Dexcom and it saved my butt on Friday.

I came home from walking the dog and decided to go out again. I glanced at my Dexcom and saw 60 with an arrow pointing straight down. I felt fine but decided I'd better check. My BG was 57. I almost went for a walk with a BG of 57, and I didn't even know I was low. If it hadn't been for Dexcom warning me I'd have been in big trouble. So when I say you are my heroes, I mean it.

On Friday night when my BG was on a roller coaster I reached out on Twitter to the DOC. I felt supported and understood, even when my unstable BG made me shake and cry. I don't face diabetes alone. There are people who know what I'm going through and their support made a big difference on Friday. Jeff Neitzel , Renée Grier , Julie Persinger   and my dear friend Beatriz Domínguez thank you so much for helping me through a hell of a night. You're heroes to me.

My medical staff are all heroes, but this week one of the CDE's did an outstanding thing for me. Barb Kopleman got a saline start on an Animas Ping at the same time I started my insulin pump. She went through all the steps with me, even though she didn't have to, just to know what it's like to use a Ping. Barb is a Type Awesome and I'm glad to have her looking after me.

Diabetes sucks. Thanks to my heroes it still sucks, but I can deal with it anyway. That matters to me.

Saturday, May 19, 2012

D-Blog Week #6 -- Saturday Snapshots

Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

My life with diabetes in pictures


Friday, May 18, 2012

D-Blog Week #5 – What they should know

Today's topic: “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”

The first thing I would tell them is to head over to Kerri's blog and read this because she already said what I was thinking. Next I would refer them back to the D-blog link for today because this topic is important.

One thing I would like people to know about diabetes is how much math is involved. Carb counting is only the beginning. For those of us who use insulin to carb ratios, figuring out how much insulin to use becomes a complicated word problem. I always hated word problems.

 “A passenger train leaves the train depot 2 hours after a freight train left the same depot. The freight train is painted blue and carrying 9 hogs, 32 chickens, 11 small engines, 3 rare organic mushrooms, and is traveling 20 mph slower than the passenger train. On the passenger train are 59 members of the St. Matthew’s Children’s Choir, 14 crying babies, 3 apples, 2 oranges, and 1 service dog named Rudy. Find the rate each train is traveling when the passenger train overtakes the freight train in 3 hours.”

Thursday, May 17, 2012

D-Blog Week #4 -- Fantasy Diabetes Device

There are two. One would be a magical spatula that turned high carb  and high fat foods into low carb and low fat foods without losing the taste. That would be awesome! Flip the bacon over and suddenly it has as much fat as a lettuce leaf, but still looks and smells and tastes like bacon. Mmmm bacon. With just a flip, caramel banana nut pancakes instantly have 15 carbs. Mmmm caramel.

Wednesday, May 16, 2012

D-Blog Week #3 -- One Thing To Improve

One thing to improve? Just one? I'm a work in progress and a lot of things need improvement. Still, if I got my report card and one thing was circled in red pen it would be losing stuff. I need to work on keeping my diabetes stuff in ONE place so I don't lose it.

My supplies are in the laundry room closet. Since I started pumping I've taken over a whole shelf. I know where my pump sets are and Dexcom sensors. All of my things are organized. It's the meter, strips, and pricker that I struggle to keep track of. I used to keep them in the ugly black pouch that came with the meter. Then Bea (@crankypancreas) and I were at Walmart. We found these little bags.

I got one for my meter, strips and pricker. There's even a zippered pouch inside for alcohol wipes and lancets. I am organized enough to keep my supplies in the bag. What I need to work on is knowing where the bag is.

Tuesday, May 15, 2012

D-Blog Week #2 -- One Great Thing

Today's topic: Tell us about just one diabetes thing you (or your loved one) does spectacularly!

I don't know if I do anything spectacularly. When it comes to living with diabetes I do what I have to do: test before and after meals, exercise as much as MG will let me, and eat right 80% of the time. Do I do these things spectacularly? Not really. I just do them because I have to. What I think I do spectacularly is maintain my sense of self in the middle of a life-storm. I do not let diabetes, or MG, decide how I feel about my life. They don't change my goals or who I am on the inside.

Monday, May 14, 2012

D-Blog Week #1 -- Find A Friend

This is my first year participating in Diabetes Blog Week because of course this is my first year living with diabetes. It's been difficult making all the adjustments but made much easier by reading so many blogs. If you have diabetes and you blog all I can say is thank you. You all helped me make the transition from terrified newcomer to mostly confident D-blogger.

 As I'm thinking about friends I've made this year I am grateful for the chance to meet face-to-face with these bloggers:

Mike Durban

Mike Hoskins

Jeff Neitzel

Bea Dominguez

Not only have I found online connections, but I've made them in the real world. Mike, Mike, Jeff and Bea have made life with diabetes easier. I have to live the D-life. I don't have to live it alone and that matters to me.

On a side note, I met with Jill from Animas and had pump training today. The meeting went from 2:30 to 5:30 and I'm wiped out tired. I honestly don't think I can learn any more. My brain is full. It was worth it, though. I'm now pumping insulin with XPU my eXternal Pancreatic Unit. Bye Bye pens and hello technology!

So far? I'm amazed. Amazed at my pump and at the kindness and knowledge of the DOC. Let's keep blogging and sharing what we discover along the way. Our efforts matter. I wanted to say that as we begin D-Blog Week together. And I wanted to say thank you.

Thursday, May 10, 2012

Weight Loss?

Hello. My name is Rex.

Great Dane Picture, also called German Mastiff, Danish Hound, and Gentle Giant

I used to be a massive 200 pound Great Dane. But then I went on the fabulous new Weight Trimmer’s Diet Plan and look at me now!

(Results not typical)

That’s right! I lost 193 pounds in just six weeks. It was so easy! I ate half a teaspoon of delicious Weight Trimmers Dog Food and I ran on a treadmill for a mere ten hours every day. All of that hard work paid off. Now I am small and yappy. I mean, happy. I always knew I was really a Chihuahua trapped inside a Great Dane’s body. If I can do it, anyone can do it! Weight Trimmers Dog Food. Try it today!

(Results not typical. Rex is a paid spokesdog. Average weight lost on Weight Trimmers Dog Food is 1.5 pounds. Rebound weight gain occurs in 98% of dogs who try it. Weight Trimmers Dog Food may cause anal leakage, vomiting, vertigo, heart palpitations and lead to an early death.)


For some odd reason no one tries to turn a Great Dane into a Chihuahua. But how many of us have tried to diet our way into a completely different body? I have. I've also noticed something about genetics. Adoption studies have determined that biology determines weight more than you'd expect. As an adoptee I can tell you I don't resemble my adoptive parents but when I met my biological mother it was like looking in a mirror. If mom and dad are tall and thin, chances are you're tall and thin. If Mom and Dad are short and stout, chances are you're short and stout, too.

Maybe it’s time for us to recognize that human beings come in different sizes. Maybe we need to focus on exercise and eating healthy foods instead of trying to shrink our size. I can't guarantee I'll lose a single pound, but I can guarantee I'm eating better and exercising more, and that matters.


I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

If you email me your personal information will not be shared without your permission and your email address will not be sold. I hate spam. Even with eggs.

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