Monday, August 29, 2011

Type 2 Burnout: Wendy's Story

Wendy Pederson was one of the first people to contact me with a post after I announced the "Your Voice" project. Wendy is a facebook friend of mine, found through the legions of other D-friends we have in common.

She has a lot of d-related things going on in her life, but shared with me about her husband who refuses to sleep if she's had an alcohol beverage as he's afraid her sugars will drop too low in her sleep. And her chinchilla who sits & stares at her if she's too high or low (diabetic alert chinchilla?!?!)  She is also fighting to try to get a CGM which her insurance won't cover because she's a T-2, even though she's on insulin.

Wendy shares some of her frustrations with diabetes here. She can be found on her (little used, in her words) Twitter account @thewired1.

I’m currently T-2, insulin dependent. I’m frustrated, and dealing with my own dia-burnout at the moment.

I’m a 4th generation diabetic. My father was T-2 and in my memory at least, was reasonably controlled with oral meds. He passed 16 years ago from injuries in car accident. I do not remember my grandfather—he fell into a diabetic coma in during dental surgery when I was just a month old in 1973. My great-grandfather lost a leg to the D-monster sometime in the 20’s-30’s; it was gone before my father was born and he died in the 50’s.

I was diagnosed in March 2004. At once I felt both panicked, and relieved. There was a reason I was so tired after eating, so thirsty all the time, taking even longer to heal than normal and having recurrent ‘female’ infections! I clung to the memory of my dad taking his pills and being relatively ok, though he only followed his diet when my mother was with him. My boyfriend took it all in stride. After all, his brother had been diagnosed T-1 just a few years before so he “knew it all!” even though his brother lived out of state and had for years before being diagnosed.

The oral meds did not work for me. Insulin was a lot easier to deal with and kept me in far better control. I married the boyfriend in July 2005 and had bariatric surgery in December 2006. I had what I thought was my last insulin shot on December 3rd, 2006 and surgery on December 4th.

I’ve now been back on insulin for over a year. My weight is back up to near pre-surgery levels. My blood sugars are OK, and I’m trying to let “OK” be enough for now. I’m so sick of trying to keep on top of everything, and to have everyone think it’s easy, or no big deal, or this or that or… or… or…

My Diabetic Educator is also one who talks as if someone can be perfect when it comes to diabetes. “If you count your carbs right and adjust for activity, you should never go low and your highs should be minimal,” she says. “There’s no such thing as an unexplained blood sugar reading” is another so-called gem. I’ve looked at her and asked her to explain how I can go low 5-6 hours after eating when I know I under-treated. Or how I can be at 70 (which is low for me) and shaky, nauseous, and treating the low only to have it drop even LOWER for the next hour as I keep treating with juice boxes every 15 minutes. Until I finally tell myself ‘screw it’ & reach for a Snickers bar.

I try hard, so very hard, to not let diabetes define who I am. It seems the harder I try, the worse the burnout gets.

Anyone else have that sensation?

Thursday, August 25, 2011

Meet Daniel

I met Taylor's mother, Vivian in the D-OC. She is my closest neighbor in the D-OC. Sadly I don't get to see her and her family as much as I would like. But in meeting Vivian, and her T1 son Daniel, I also met the other amazing members of the family, including Taylor, Sarah, and Paul. This family is amazing all in itself, but I wanted to ask Taylor to share about her brother and diabetes for the "Your Voice" project. What she sent me touched my heart in more ways than she may ever know.

My name is Taylor, I'm 19. My brother, Daniel, is 13 and lives with
Type 1 Diabetes... But Diabetes is not him. He's a 13 year old boy. Goofy, odd, oblivious, and above all sweet (ba-da ch). In all seriousness though he's (in is odd way) the most compassionate 13 year old boy I've ever met. He also lives with Aspergers so the above statement really means something.
Yes, Diabetes is priority in his life. He needs to live and he needs to be healthy. Our family has learned a lot from the past few years while growing with Daniel. It's not easy, it's not fun, and it's scary to be honest sometimes...

But I don't want Cara's blogging opportunity from me to be complaining and telling you how bad it is. You know how horrid and tedious it can be. A lot of you submerge yourself in the negatives and that's no more healthy.

I rather tell you about the normal, silly boy who helps his little sister take care of 3 flocks of chickens. Who competes in 4H competitions and can tell you anything about just about any anime, game, game-to-be, system-to-be, etc. Who reads at a Senior level in High School as an 8th grader and borrows my dad's computer programming books to figure things out himself (and builds programs and games).

I much rather tell you about his sense of humor and how much he makes our family laugh on a daily basis. And how he's recently started working hard to learn to draw and make comics. How he wants to own his own company and be the boss --- and the advances he's making towards that right now. How he participates in band with his best friend and how much it drives everyone insane that he's so forgetful sometimes... but that's him.

I much rather tell you everything Daniel really is. He's a remarkable brother, a loving son (even if he's not much of a hugger), a quirky grandson, a faithful friend and just a really cool kid.

Yes, he's a Diabetic. No, he had no choice with that and it's not fair. He's in that fun puberty stage and life in every area is changing. His blood sugars are all over the place and random. He's about to be in High School next year which will put stress on him and he already doesn't like change --- but he's excited nonetheless.

Next summer he will face his first band camp. That comes complete with long hours in the sun from sun up to sun down, nonstop moving and working out and little, short water breaks. For a whole week or 2. That's a diabetic's nightmare I'm sure and it's going to be rough until he figures out how he'll respond to it, but he's not letting the Diabetes control his life. He's not letting it stop him at all and he'll get through this and everything else until there is a cure.

I'm proud of my little brother and my family. We have 2 chronic illnesses in the house alone (my dad lives with MS) and it's not easy. For the guys or for anyone else, it's not easy. I promise you though they laugh more than most family's I've ever met. We'll all admit we're scared sometimes, but why let the fear make you miserable and take things it doesn't have to away?

And thank you for this opportunity, Cara. I know it's a bit late blogging. But with all this being said I'll go back to the original topic she asked me to blog about --- I'm not a sibling to Diabetes. I'm a sister to Daniel... and I've learned so much from him. He (and my dad and quite honestly the rest of the family too) are inspirations. It's not fair but it's life, and we make the best of it and stay positive until there is a cure.

Daniel will be the head of a big gaming company one day. He'll do a lot of things. And he'll do them with Zack (Pump) and a big glass of Diet Pepsi by his side.

Monday, August 22, 2011

A Letter to Diabetes

Mary Lyn Schuh has been living with type 1 diabetes since age three. She has made it her mission – and her profession – to help find better treatments and ultimately a cure for type 1. Mary Lyn has gone from organizing her first fundraiser for JDRF when she was 9 years old (a “Quarter Fair” in her back yard with games that each cost 25 cents) to working as the Executive Director for the Middle Tennessee Chapter of JDRF. She and her husband, Jamie, have been married for nearly 8 years and live in a suburb of Nashville .

In an effort to put an interesting spin on the fundraising letter she send out to her family and friends for her JDRF Walk team this year, Mary Lyn decided that after 25 years, it was time she gave Diabetes a piece of her mind…

Dear Diabetes,

I hate you.

You came into my life – completely uninvited and unexpected – when I was just three years old. You forced me to grow up too fast. And you’ve been hanging around ever since then, trying your best to mess stuff up.

You stink at doing what you’re told, Diabetes. No matter how hard I try to control you, you’re always irritatingly unpredictable. No matter how hard I try to push you into the background, you manage to show up and make yourself the center of attention. You can see a memorable moment coming from a mile a way and you try to make it all about you instead. You’re so selfish.

You have a real knack for embarrassing me too, Diabetes. You make my Continuous Glucose Monitor (CGM) beep and light up while I’m enjoying a movie in a dark theatre, making me look like I don’t know how to turn off my cell phone. You make me stop to eat Starbursts in the middle of my Spinning class while getting strange looks from the sweaty cyclists around me. And sometimes you make me into someone who is short-tempered and mean. You make me say things I don’t mean to the people I love. You make me look like a real jerk, Diabetes.

You know what else? You have a stupid name. When I tell people about you, they get confused. They never seem to understand that you’re the “type 1” kind, so they say stupid things like, “well, couldn’t you just eat less sugar?” They think I did something to deserve you, but you and I both know the truth. When you teamed up with my immune system to attack my pancreas, there was no stopping you. Things get dangerous when the two of you get together and I always worry that you’re secretly planning another attack.

And you’re always interrupting me. Do you know how annoying that is? You rarely let me sleep through the night. What’s worse, you rarely let Jamie sleep through the night – that’s just mean. I can never head into a meeting at work without tending to you first. You know how much I enjoy cooking and eating, so you try to mess that up too. Counting the number of carbohydrates in a great meal can really make me lose my appetite. And heaven forbid should I indulge in something like pizza or frozen yogurt, you always make me pay for that later, chasing down high blood sugars all through the night. You can be downright spiteful, Diabetes.

You’d think that 6-10 shots a day and countless finger sticks would be enough to keep you happy, Diabetes, but no, you’re much too sadistic, aren’t you? You weigh me down with so much stuff everywhere I go. I can’t even take a walk around the block without my CGM, insulin pen, and Starbursts – you’re so needy.

Sometimes, Diabetes, you really scare me. I can usually keep you from wreaking too much havoc in my life, but every now and again you really make a run at me. Next thing I know, I’m covered in a cold sweat, desperately downing juice, cursing you with each gulp. Being so close to the edge of consciousness, I am terrified that I could just slip away and not wake up. And I know how you work, Diabetes. You are always trying to cause problems with my eyes, my kidneys, my heart – you just won’t stop, will you? This is when I hate you the most, when I think about you stealing my eyesight or stealing years off of my life. You are despicable and you make me feel helpless.

But you should be the one who is scared, Diabetes. That’s right, you heard me! JDRF is leading the way in creating an artificial pancreas, a type 1 diabetes vaccine, and ultimately, a cure. They are funding a lot of really smart people all over the world and working hard to put an end to you once and for all. Plus, I have a whole bunch of people who care about me – in fact, I’ve copied them on this letter – and they are going to make donations to JDRF and help put an end to you as quickly as possible. There are a lot of us, Diabetes, and we’re full of hope and we’re coming for you!

One day I’ll tell my grandkids about you, Diabetes, and about how you used to be a big part of my life. And those happy and healthy kids will give me a funny look and start to giggle. When I ask them what’s so funny they tell me that talking about diabetes really makes me sound old because nobody has that anymore. But they ask me to tell them about you anyway, Diabetes, even though they’ve heard the story before, because they just love the part about the amazing party we threw when I was cured.


Mary Lyn

Thursday, August 18, 2011

Endo Troubles

My next guest post is from a dear friend of mine. I knew her husband when we were in high school and had stayed in touch with he and his sisters. When he married Angel, she and I connected on MySpace (yes, it was that long ago....) and had several chats about living with T1. Since then, I've had a chance to meet her several times and love getting to spend time with her and her family. I asked her to blog for me and I was thrilled to get her post, since it was on a topic that I know we have both dealt with before. So, on with the show:

Hey there! This is my first attempt at blogging. My wonderful friend Cara asked me to do a guest spot so here I am. My name is Angel and I am a lot of things, military wife, mother of 2, sister, friend, and diabetic. All of those and more make-up my life no matter which order I put them in. When life is good it seems that the diabetic aspect is first and taken care of before anything else. I spent way to long pretending it wasn’t something serious and life was crazy! Now in my late 20’s I try my hardest to keep everything balanced. So I thought I would share an experience from last week that really makes it hard to take care of myself.

So "textbook life" for a diabetic is a joke and I would like to take that text book and hit every doctor that believes it upside their head with it! I have had many endocrinologists in my 16yrs as a diabetic. Some have been wonderful, some make me want to scream and yell and be violent. In November 2009 my husband got orders to Davis-Monthan afb, az. Aka Tucson. After meeting with my PCM soon after arrival, I received my referrals for the endo.. First up... Julia Levi- all I'm going to say is she isn’t a real endo. She told me to test my blood sugar LESS and not to drink juice when low.

I called my insurance after the appointment and changed to Dr. Cordova-Kisse. She is a student at the University of Arizona and was under Dr. Thompson. Every appointment would go good until he came in. In April, I saw her and because of a DKA episode and my fear of it happening again while watching my kids. I took their advice and said goodbye to my pump for a little while and went on lantus. I don’t like the shots because once it is in, you can't take it out and you can't disconnect from it like with the pump. I was happy for the time being though.

After a few months the weight I had lost had started to come back and my numbers were going crazy. So I hooked my pretty pump back up and everything started to get better! I went to my endo for a check-up and to have him sign the scripts for Minimed so I could get my supplies…. If it was only that easy!! My blood pressure was extremely high, my heart was beating odd, and then Dr. Thompson walks into the room saying this “Good morning Mrs. Brumbaugh, I see you are not doing well, I think you and mother nature are having a big fight. I don’t think you know how to basal or bolus and I truly believe that you are being a 'bad diabetic.' I am not going to endorse your pump and will put that in your chart, you need to learn how to do this.”

Hearing this I was BEYOND PISSED! This doctor wouldn’t sign a script to renew my cgms earlier this year because he believes if you can test your blood you don’t need it… DERR! I picked up my purse called him a few names and told him he has no right being an endocrinologist and left. After I got into the car reality hit me. I just left the office with no Humalog, no pump supplies and no lantus. LOVELY! I called my PCM and was able to see her the next day, my PCM was about to sign all the scripts until she checked with her head doctor and found out she can't ignore what the other doctor put in my records (they are part of the same hospital).

Anywho, I called my pump company and told my rep that I don’t know what to do. She asked me who my doctor was, and after telling her she said "WHOA REALLY? He took you as a patient with a pump? He hates pumps!" Now that was a fun fact to learn. I was recommended by Minimed to make an appointment with another endo, and will see her soon. Minimed also came through for me and sent me supplies to get me to the appointment at the end of the month.

I have a hard time going to these doctors as it is. They think they KNOW what diabetes is. They know what their text book said. And can’t see past that. I think that an endo or diabetic educator should live like one for at least 5 yrs before they can advise a type 1… Which is why I am going to school for nutrition and eventually will become a diabetic educator. I hope its soon before I lose my mind from having to deal with all these jack wagons. I find that these kinds of doctors are not what type 1s need, they are the opposite.

Thanks again Angel! I'm so glad you chose to share this story with us.

Monday, August 15, 2011

Letting Go: My Mother's Story

This is going to be one of the hardest posts for me to put up here. I asked my mother to write something for the "Your Voice" project. I knew she would have the perfect words to say and I was right. I love my mom. She's one of my best friends and one of the most genuine and kind people I know in the world. Although I like to think I got some of my better traits from her, I still wish I could be more like her. Some people say they dread the thought of turning into their mother. I say that it would be a honor for me to turn out like her.

I am the mother of a daughter with Type 1 diabetes for 25 years. She is now 30 years young and loving life as far as I can tell. I spent her childhood on a roller coaster of emotions trying to prepare her for her adult life, always hoping for some middle ground so that she would be able to have some peace in her life.

I have felt all, I repeat all, of the anxieties of a mother letting her chronically ill child grow up. The one I wish to share today is perhaps the most trying of all. Going thru school, living at home, she needed us to help her in just about every way. being 30 she needs us to understand her life and let her live it. Thank God she is doing just that. She has refused to allow this monster that looks over her shoulder 24 hours a day 7 days a week to control her life. I have so much love and admiration for my little girl (and yes she is still little 4' 11") and it is a joy to stand back and see what she has become. Strong, independent, a blessing to everyone who knows her and a friend like no other, the kind that you can rely on no mater what. She lights up every room and never stops amazing those of us who love her.

She keeps things from me, I know she does. It is a part of the process. She cannot have her freedom if she keeps calling for help. That is how she sees it and that is the only thing that matters. I am there for her, and she knows it. I ask question when I must (you know moms) and I read between the lines a lot. We know each other through and through and that helps. I have confidence in our balanced diplomacy of things I do not ask and things she feels I need to know. This is a balancing act of sorts but it is so worth it. For her to live her life her way regardless of what tomorrow may bring is the only way. I must love her and let her, for with out that freedom it would be no life at all.

Thanks you, Mom, for writing this. You do a fantastic job of letting me live my life. You always say that God blessed you with me. But He blessed me with you as well.

Thursday, August 11, 2011

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

Monday, August 8, 2011

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.

Friday, August 5, 2011

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.

Thursday, August 4, 2011

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 her words "just for fun."

Tuesday, August 2, 2011

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.