Tuesday, November 13, 2012

#NHBPM Day 13: Taboo

This is day 13 of Wego Health National Health Blog Post Month. Today's topic is to "Write about something taboo".

Actually, the very thing this blog is named for seems to be taboo in some way/shape/form. 


How many people have diabetes but don't want to talk about it? How many people HAVE said they have diabetes only to be given "the look"...if you or your child has diabetes, you know the look I'm talking about! Sometimes it goes beyond the look...

  • "Should you eat that?"
  • "I guess you shouldn't have had all that candy."
  • "What did you eat/feed your child?"
  • "Does it run in your family"
  • "Can't you just lose some weight and eat less sugar?"
You know when you tell people you have...say...the flu...do they immediately try to pin down who is to BLAME for the flu???? No!!!!

But diabetes seems to equate a need to BLAME or worse, to SHAME...

It's unfortunate because then you almost don't want to tell anyone. You don't seek out the much needed support.

So yeah...I think it seems like having diabetes or being able to talk about diabetes is taboo in the everyday world. And, that's just wrong.

Monday, November 12, 2012

#NHBPM Day 12: This is Ridiculous!

This is day 12 of Wego Health National Health Blog Post Month. Today's topic is to "Call BS on something - What is something that is just ridiculous?"

This post is late in the day but I am going to squeak by and get it in. Alex and I had a busy day. It started at 5:30 this morning with a drive down to Phoenix Children's Hospital for outpatient surgery. This surgery was supposed to take place last month. Unfortunately, Alex got sick and it had to be rescheduled. So, today was the day. I really didn't have time to think about it much or stress with all the diabetes stress of this past week. Maybe that's a good thing. 

Recovery Room in PCH after ear surgery 11/12/12
This was a very minor surgery and something we've grown used to in some ways. Alex has had chronic ear infections since she was a baby. She got her first set of ear tubes when she was 7 months old. She proceeded to get tubes several more times as well as her tonsils and adenoids removed. Her last set of ear tubes were placed when she was 5 years old and in kindergarten. These were her second set of "t-tubes" - more permanent tubes meant to last up to 5 years. The regular tubes never worked for her. 

Before diabetes became the bane of our existence, Alex's ears filled that role! Besides all the ear infections, tubes, tonsils, and adenoids, they diagnosed her with possible cholesteatoma when she was 4. It turned out we got lucky and they caught it very early so that what she had were the "pockets" that had not filled with fluid/tissue yet. We managed to reverse the pockets between the tubes and getting her allergies sorted out which caused the congestion and pressure build up. She had allergy shots for a year once a week (and I thought that sucked at the time - ha ha). 

Anyway...Alex is now 10. She's had the tubes in for 5 years. She's had a few nasty ear infections over the past few months. It was decided the tubes need to come out. This will be the first time she will be tube free since she was 7 months old except for about the year before she developed the cholesteatoma...let's hope not having tubes doesn't cause that again!

So here we are this morning, sitting in the pre-op and the ENT comes in and starts telling me how I need to use cups and cover the openings with saran wrap and have Alex hold them over her ears while I wash her hair for the next weeks over the sink. I kept waiting for him to grin and say "just kidding". Until, I realized, he was dead serious! Like WTF? That's RIDICULOUS!

You see they didn't just pull the tubes. Alex has had some holes in her ear drums noticed by the pediatrician and ENT over the past year, around the area next to the tubes in both areas and another tiny speck. So, they were pulling the tubes and doing a patch paper myringotomy (spelling?). She can't get the ears wet at all. I asked why she couldn't use her plugs? Apparently, that could cause trauma in her ear canal. And, there is more likelihood she'll get the ears wet with the plugs.

My face must have shown the horror I felt inside. Because then the ENT said that with all we've been through, washing her hair in a sink shouldn't be a big deal. He's right...it shouldn't. But Alex HATES when I touch her hair. I swear just putting the brush within 1 foot of her head causes her to scream at me. I swore off washing or brushing her hair 2 years ago. The neighbors must have thought I beat her she would scream so much. At any rate, I don't do Alex's hair! I'd rather do shots to her!!! At least that is quick. Washing her hair over a sink while she screams and holds saran wrapped glasses over her ears? Now that is just ridiculous!

Sunday, November 11, 2012

#NHBPM Day 11: My Favorite Thing

This is day 11 of Wego Health National Health Blog Post Month. Today's topic is to "write about your favorite thing that is not health-related but likely improves your life."

This is one of my most favorite things:

I am 100% positive she improves my health, and the health of everyone in our family!

I NEVER wanted a dog! We had 3 cats that we sadly had to find new homes for when the kids were very young. My son had pneumonia over a dozen times before he was 4 years old and was diagnosed with asthma. We knew the cats made his asthma worse. 

Asthma sucks! I believed we'd never own a furry animal again.

And, then my husband and children came home from the mall one day in 2005 and announced that I just HAD to go see this dog...a dog that didn't shed or give off dander. My reaction was, "nothing new will enter this house that poops until something that poops leaves!" But...I went to see the dog. They called it a golden doodle. It was the cutest thing ever. And I was hooked. However...I didn't want a dog from a mall shop. And, I didn't want a dog that would grow to be 70 pounds. So...we went searching for reputable breeders and doodles that weren't so big. I found one in Oregon. And when I emailed them for information, they sent me this:

I had to have her! She was estimated to be 40 pounds full grown (her dad is a 38 pound poodle). 

We named her Teyla. Her name comes from a character in Stargate Atlantis (chosen by the boys in the family). I liked the name. She came to live with us when she was 9 weeks old in September 2005.

Teyla is a smart dog! She house trained in 2 weeks. She seemed to understand us in a way I have never seen an animal do. At the same time, she was a puppy.

Teyla liked to chew. There was a time around 6 months of age I was ready to send her back! She chewed the sprinkler system in the yard. She chewed our socks. She chewed our shoes. I knew she was ready for obedience school. So, she went to school! The trainer said she was one of the smartest dogs she'd ever seen. Maybe she says that to everyone, but I believed her. And in those training courses, Teyla and I bonded.

She became my "baby". Yes, she belongs to all of us. But I'm her mom. She thinks she is one of the kids.

I think she is right though. She is one of my kids. And she loves us all. 

She tolerates the things we do to her.

She gets along with others.

She gives GREAT kisses!

She is always there to lend support in only a way she can.

When Alex was diagnosed with diabetes, I came home one evening overwhelmed with grief and sadness. I had failed at giving Alex her first shot of insulin. I hadn't slept in days. I sobbed hysterically. Teyla curled up in my lap and just laid there while I sobbed.

When Ben visited Alex (who was still very sick with DKA), he was overwhelmed as well. He went home that evening and threw up repeatedly. Teyla was by his side the entire night.

That dog knows what we need when we need it. She reduces our stress and makes us laugh.

She is just one of the kids.

Saturday, November 10, 2012

#NHBPM Day 10: Something Funny

This is day 10 of Wego Health National Health Blog Post Month. Today's topic is to "write something funny or share something you found funny."

Psssttt....Christmas is coming...

Friday, November 9, 2012

#NHBPM Day 9: Design a Care Package

This is day 9 of Wego Health National Health Blog Post Month. Today's topic is to "create the perfect care package for your members or fellow patients."

There are many things that we were fortunate to get when Alex was diagnosed, but if I had to design one, here is what I would do (some will be repeats of what most people already get):

  • Calorie King Book - this book was given to us at the hospital and it really saved us in the beginning. AND, I would include a card with it that showed you where and how to download the Calorie King app for your phone. I use that app almost daily and use the book as a backup.
  • Type 1 Diabetes Silicon Bracelets - one of the things we were told when leaving the hospital was to order some medical alert bracelets. And, I agree that a custom engraved one is great. However, when you are leaving, there are a TON of things you have to remember. And when you order a bracelet, it takes a while. These silicone bracelets have been great to have around - Alex has lost her expensive bracelet twice now. These bracelets are cheap and easy to wear and can be used in the interim.
  • A Bracelet for Mom - those first few months are rough! Something to look at that's easy to wear that says something as simple as "hope" or "faith" or "courage" in relation to caring for a child with diabetes could be that little boost you need sometimes.
  • Laminated index or smaller sized cards with easy to read instructions for using Glucagon and treating lows. I haven't seen this but I wouldn't be surprised if this exists somewhere. I'd love to have these with a keychain ring that could be clipped on a diabetes bag. 
  • Glucose Tablet Keychain and Starter Tablets - I love this keychain. We have one clipped to Alex's meter and my husband and I have them clipped to our bags/keys too. Alex can go to play at friends that live within a few houses and take her meter with her and the 4 tablets. She has called me on several occasions with a low and taken the tablets while I walk down there. It's easy for her to carry.
  • A CUTE meter case - Kids need things that are fun and those boring black cases don't help when you're getting used to poking yourself several times a day! About a month after we came home, Aviva sent us this case (and meter). We LOVE the case. In the ideal setting, kids could get cute cases at the hospital.  I don't really care what brand but this is the one we ended up getting and we have used it ever since. It's small enough to carry and fits what she needs. Of course in an IDEAL world I'd LOVE one of these Skidaddle Bags but I'm pretty sure that wouldn't be feasible financially to offer in a free care package! One can dream though since this is the perfect care package!!!
  • The JDRF Bag of Hope - this is something that is usually given out and if not can be ordered. Alex received one in the mail a few weeks after we came home (they were out at the hospital). This is just a wonderful thing JDRF does for kids. Alex takes Rufus many places and the book Taking Diabetes to School was great for her, her brother, and taking to school and friends to talk about diabetes. Now that I'm thinking about it, that might be where we got the cute meter case too. I just wish we had them at the hospital and in the perfect situation, that would always be the case.
  • Re-Usable Ice Packs - these come in handy when you're on shots and carrying insulin or snacks that need to be kept cool like cheese sticks.
  • A kid friendly, specific low carb snack list - when Alex was on shots she much preferred snacks under 5 grams of carbohydrates between meals because that meant no shot. So one of the first things we had to do was do some searching for snacks that fit the bill- string cheese, pepperoni, sugar free peaches cups, carrot sticks with ranch dressing, 14 fish crackers, 11 pretzel sticks, etc. How I wish a list like this was laminated and given out. This became less of an issue once we moved to a pump, but those first 6 months, it was Alex's preference to stick to the low carb list between meals most of the time. Whenever I visit forums, I see this question a lot from a parent who has just come home from the hospital with their child. And a lot of times people come back with ideas but others will go into the whole "they can have whatever they want" speech. Yes, they can, BUT some kids prefer low carb over shots between meals...
  • Cotton Balls, Alcohol Wipes, and FUN bandaids - these aren't prescription items so they don't tend to come home with you - and you have enough to deal with those first few days. It would be nice to get a nice big bag/box of each of these. Remember kid themed bandaids. Why bandaids? I know for about a month, Alex wanted bandaids on her fingers after poking them. Did she need them? No! But they made her feel better emotionally!
  • Infant Heel Warmers - What? We smuggled a few of these when we left the hospital! We had one HECK of a time with Alex's first meter (which ironically she now uses AGAIN). I still don't love this meter. I have to be honest about that but it works with her pump so we use it. It takes a LOT more blood than the Freestyle Lite meter which I LOVED. It is also unforgiving if you don't get all the blood you need IMMEDIATELY. In the beginning, when we didn't realize there were other meters that took less blood, that meter was the bane of our existence. Alex's fingers did NOT want to give up a lot of blood. Those heel warmers helped warm her fingers and get the blood flowing until we got the hang of what we were doing. Loved those things!
  • That leads me to another thought. Why not have a chart showing a comparison of meters on the market. After 2 months of struggling with Alex's meter, I took it upon myself to find charts online that compared size, cost, strips, amount of blood required, and whether the meter company had a program to help with out of pocket prescription costs for strips/supplies. Wish I realized there were true differences between meters/programs from the get go and that the meter you get at the hospital isn't a one size fits all deal.
That's probably enough items - too much is overwhelming when you're overwhelmed enough. 

Thursday, November 8, 2012

#NHBPM Day 8: Dear Alex's Health

This is day 8 of Wego Health National Health Blog Post Month. Today's topic is to "write a letter to your health."

Dear Alex's Health:

Today I'm pretty ticked off at you. You caused me to miss Day 7 of the blog challenge. But that was really the least of my worries. You scared the F&*(#!ing crap out of me!

We have had a rough 5 days starting with a site change late last week. BG numbers started getting higher than "normal". As I mentioned previously, by Saturday night we got to see a 535 on the meter. In the past 5 days I've change infusion sites FOUR times. That really ticks me off for many reasons - those aren't cheap sets and Alex is NOT a happy camper right now. 

I thought we nipped this problem in the bud finally by Monday because sweet low 100 numbers returned. And then came yesterday morning. I had to change Alex's site - she had less than 10 units left in the cartridge and her site was getting worn because she has started wearing jeans and it happens to catch on the waist line. So I changed it before school...not something I normally do. 

At 10:30 I got the call from the health room. "Hi Mom, I'm 422." Having never experienced a site that COMPLETELY failed I calmly told her to correct, drink a glass of water, and come back to the health room in 1 hour to retest. 

11:30 Phone Call: "Hi Mom, now I'm 458 and I don't feel good."  So now I"m cursing under my breath and grabbing a completely brand new bottle of insulin and a complete new sealed box of infusion sets and the blood ketone meter. I get up to the school and go to the business of changing the site. I should have checked ketones first I guess but we'd been checking all weekend and it's been negative. So I changed the site. I did NOT rip up the old site...just distracted. Then, as we are putting everything away I ask her to test ketones. 0.7...I had to pull out the chart to see what 0.7 meant. Moderate Ketones. So much for going back to class...

By the time we got home, Alex is feeling like she wants to throw up and looking less perky. I go fumbling through my binder from PCH because even though I *know* the steps, my mind and heart are racing because all I can think about is Alex on 12-20-11 being so sick she is in the ICU and panic washes over remembering steps. I call PCH and stupidly call the wrong number (the non-urgent number) and leave a voicemail. Then I call my mother-in-law (an RN) and let her listen to me babble. I'm frustrated because I can't figure out WHY this is going on. She doesn't appear sick. I've changed that damn site 4 times. Why? Why? Why? 

1 hour passes and we retest. Her BG is 336 but ketones now 1.2. I go back through the binder and find the urgent care number and call it. The nurse is calm and we discuss everything. She wants to have me give Alex a shot in another hour and call them back if she starts throwing up repeatedly.  Follow sick day protocol. Follow sick day protocol. Follow sick day protocol. 

By 4 PM, Alex's BG is 172 and her ketones are 0.4. She is looking better and asking to go to her movie making class which was set to start that night and run for 6 weeks. I figure it's safe and we go. BY the time class is over she is 144 and 0 ketones. 

When we get home, I realize we never pulled up the site. So I pull it up and lo and behold the entire cannula is bent over - it NEVER went into her skin! It just folded over and laid on top of her skin. So she wasn't getting any insulin for about 5 hours. 5 hours! It took only 5 hours to be close to DKA. Holy crap! I mean I know this. I've heard this. But it's different when you're watching it happen. How does that LITTLE drip of insulin being missing for 5 hours cause near hospitalization and if not treated...death? This is crazy!

At least I know that yesterday she was in the 400s because the site was truly not inserted right. No clue about the other sites but I find it suspicious that the box of sites is missing 3 - the same 3 that I ended up pulling earlier than normal because they seemed not to be working. The one I inserted yesterday is from a new box. So far so good.

So Alex's health....get it together in there! This whole one minute I'm making plans for a scout training day on Saturday and the next minute I'm sticking my kid with needles, planning for a trip to the ER, and having panic attacks while trying to act normal so I don't scare the shit out of my 10 year old...that's for the birds. 



Tuesday, November 6, 2012

#NHBPM Day 6: The High Road

This is day 6 of Wego Health National Health Blog Post Month. Today's topic is to "write about a time you had to take the high road."

Last evening I was reading Kortnie's D-Life blog and happened to see a link to this youtube video made by another blogger, Joanne, from the Death of a Pancreas blog. It left me in tears laughing hysterically not because I find it amusing to call uninformed or misinformed people stupid, but rather because it gets super exhausting to clarify what type 1 diabetes is to the many people who think they know what it is based on what you read in the media.

Truthfully, I was one of those uninformed/misinformed people. How could anyone NOT be after all? If I google diabetes, I come up with a variety of links to diet plans, supplements claiming to "reverse" diabetes and all kinds of heaping criticism about the epidemic of obesity and the rise of diabetes. I may have been misinformed yes. But I'd like to think I never openly said something that came across as judging another with diabetes. 

I can't think of a single week where I haven't had to hear some comment about Alex and diabetes that isn't uniformed/misinformed. And unlike other incurable diseases, people feel some need to express opinions about people who have diabetes. Sometimes, I try to nicely educate. Sometimes I just bite my tongue and take the high road. Here are some examples:

Fast Food
I don't know that many people who don't occasionally eat fast food. It isn't low calorie. It isn't low carb. But once in a while my daughter wants a happy meal. Within a few weeks of coming home from the hospital, we stopped for a happy meal on the way home from getting some blood work done. We took it to the ice rink where her brother had a practice. Someone I barely knew but had heard about Alex's diagnosis made it a point to whisper behind me to someone else "perhaps that's why she has diabetes." I wanted to burst out in tears. We were like a month out of the hospital and it was the FIRST time I had purchased a meal out and was trying to count the carbs AND give her a shot in public. I was exhausted from getting up 3 times a night testing her blood. I was exhausted from a lot of things. If we had come home from the hospital because my daughter had God forbid been diagnosed with cancer, would that same person feel the need to say "perhaps her happy meals caused her cancer"? I think not. But something about "diabetes" makes it okay to critique every morsel of food my daughter eats out in public. Alas, instead of slugging this person, I simply walked away. 

My child can eat ANYTHING she wants to eat as long as she counts the carbs and boluses. That being said like EVERYONE ELSE, she should eat a well balanced diet. Your non-diabetic child shouldn't have candy corn for breakfast, lunch, and dinner. My diabetic child shouldn't either. But if she is in school and they are passing out 2 snack bags of candy corn to each child, don't skip mine or give her only one because she is diabetic!!!!! And, yes this happens at school and other places more often than I can count.

I know this supplement that will cure diabetes
We were approached by a casual acquaintance on several occasions last spring to check out this supplement that they believed would help produce insulin. I tried to be nice and say thank you and I'll read about it because saying "there is no cure for diabetes" didn't work. That was a mistake. They spent the next 3 months hounding me with cards and asking to meet me to show me a video. No matter how much I tried to be courteous and explain that my daughter's diabetes won't be fixed with a supplement you can't buy in stores and is sold through a multi-level marketing company, they continued to ask me to check it out. Since we were involved in a common group, I felt the need to take the high road and just ignore them until they eventually stopped asking me because they moved away.

If there was some supplement that could make your pancreas suddenly produce insulin...that would be called a CURE. I'm sure it wouldn't be sold by non-medical people through a multi-level marketing company for $45 a bottle.

The bad kind of diabetes
I get this so often it's insane. I'm guessing that most people's definition of "bad kind" is the kind (type 1) that doesn't improve with diet and exercise (type 2). If that is the only way to define it, then yes, she has the "bad kind". However I'm pretty sure my Uncle Billy who lost both his legs and another aunt who lost both her legs and then died would argue that type 2 isn't the "good kind". Most times it's just not worth opening up the discussion. I just smile and say she has the kind that means she does not produce insulin at all. 

There is NO GOOD KIND of diabetes! 

Loss of limbs
Why yes, I know I just brought up 2 relatives who lost limbs. But I make it a point NOT to do this in front my daughter. And, I don't make it a point to cite the worst case scenarios right off the bat when someone mentions their incurable disease. Again, God forbid if my child had cancer, would you turn around and tell me the story of your 4th cousin whose child had the same cancer and died? That's really helpful, don't you think? And please don't bring up these kinds of things in front of my 10 year old who right now needs to focus on proper self care and management and not on things that would frighten her.

Not everyone who has diabetes loses limbs or goes blind. There are a number of people with diabetes that live a long life without extreme complications. It doesn't mean that diabetes isn't a big deal. It doesn't mean it doesn't sucks monkey balls for those people who do suffer extreme complication or die from this disease. It means that between education and advancements in technology, this is a disease you can hope to manage. It doesn't mean you want to live with it. It doesn't mean a cure isn't important. It doesn't mean you can't spend every waking moment thinking about your self-care and self-management to keep blood sugars in check. It just simply means you may be able to manage it better than in years/decades past.

Monday, November 5, 2012

#NHBPM Day 5: #ListOf3 Things I'm Thankful For/Excited About/Inspired By

This is day 5 of the Wego Health National Health Blog Post Month. Today's prompt is "Write a #ListOf3 things that you're thankful for/excited about/or inspired by".

I'm thankful for lower BG readings today!

Alex and I had a busy weekend highlighted by an American Girl Fashion Show out in Chandler. I noticed she had been running higher Friday and Saturday but not alarmingly so. In the middle of the show, I asked her to test. 535. Holy crap! I've never seen a number in the 500s to date! I told her to wash her hands. The next number read 440. We corrected and I continued to monitor the situation and correct when possible. She was negative for any ketones. By the time we got home she was 510. I pulled the infusion set much to my dismay since it was not even 24 hours old. It appeared to be fine but I wasn't taking chances. At any rate, she was in the 300s most of Sunday. This morning I sent her to school with a +10% Basal setting and a call into the endocrinologist. We adjusted her basal settings across the board with the exception of 1PM-5PM (this is the period she tends to run low outside of these weird few days). This evening she's been reading between 109-151. Thank you!!!

I'm thankful for a Blood Ketone Meter!

One of the most beneficial things I learned about from the DOC would be a blood ketone meter. I scored one on clearance at a drug store for $10 and it came with 4 free strips. I asked for a prescription from the endo and they gave me free samples of more strips and the script. It's interesting - most drug stores I've visited don't understand what I'm talking about. Once filled the script with urine strips. I haven't found anyone who keeps the blood test strips in stock so it takes a few days to get it filled. But, thankfully it isn't something we use all the time. But when Alex is in the 400s and a few 500s...I'm very thankful for that NovaMax Blood Ketone Meter and test strips. 

I'm thankful for the Diabetes nurses and educators at Phoenix Children's Hospital!

I've had a really positive experience with the endocrinology team at PCH. One of the things I love is that the nurses and educators have an email address to send questions and logs too. AND, they respond FAST. If they can answer via email they do. But if they need more information or have urgent concerns, they call. I've never had to wait long. They are always nice and informative. Today was no exception. I got a call and praise for our hard work in keeping Alex's numbers in check and calling when we had concern. We discussed basal settings and combo boluses (those are new to me and I'm still nervous using them). I asked about a Dex and they were positive and the nurse said she'd speak with Alex's doctor and get back to me ASAP. So...I'm glad we've stayed with this team. I wasn't sure what we would do when we first left the hospital because PCH can be so far to drive too and I've heard feedback about some other great doctors nearby. But I love Alex's doctor. I love that if God forbid we need to go to the ER or get admitted, her care team is there and knows everything about her. I love that they respond to me so fast and are always so kind and caring on the phone. Alex loves going there too.

So there you have it...3 things I'm very thankful for at the moment!

Sunday, November 4, 2012

#NHBPM Day 4: What's in my purse every day?

This is day 4 of the Wego Health National Health Blog Post Month. Today's prompt is Write about what's in your bag/purse/backpack every day.

Full disclosure is that I'm tired this afternoon. If I had more ambition at the moment, I'd take some photos but after an evening of strange high numbers over 500 for 6+ hours followed by a cranky 10 year old who has been nothing but argumentative makes me want to crawl on the couch in my PJs and ignore the world.
Anyway, it took me a solid 3 months to find a "bag" that worked to carry the essentials after Alex was diagnosed. We tried carrying soft coolers, hard mini coolers, insulated lunch bags and pouches and so on. One day my mother gave me a bag of stuff from her RV that she didn't want anymore (this happens frequently when they visit as she is into purging "stuff" with their their limited space). Inside that bag was a black backpack purse that was insulated. I actually guess it was a diaper bag at some point but from the outside it looks like a backpack purse (no idea why she had a diaper bag). It has a front and back pocket that zips and 2 zip up pockets that run down each side. It is insulated everywhere but a front pocket. It has a strap that can be unzipped to separate into two straps and be worn as a backpack, or zipped up to be one strap that acts as a sling purse. I like having the backpack because my hands are free. I'm sure it isn't the most fashionable bag but it works and it isn't ugly.
Inside that bag are...
  • A mini wallet that has a detachable strap - this holds all my credit cards, bank card and cash as well as IDs, etc. If I am not with Alex and I so choose to, I can just take this mini wallet with the strap as a mini purse.
  • Pack of tissues
  • Pack of sugar free chewing gum
  • Pens
  • A mini bottle of antibacterial hand gel from Bath and Body works
  • Mini notepad
  • Alex's glucose meter (zipped in it's own pouch)
  • A larger zipped pouch fits in the side pocket and it contains the diabetes essentials: Glucagon, Glucose Gel and Tablets, Syringes, Alcohol Wipes, Lithium Battery and regular battery (for her pump and meter); 2  mini bags of Teddy Grahams, 3 Quick Sticks, 3 Smarties, Ketone Strips, Spare Infusion Set and Cartridge

That's it! I like this system because...the large zipper pouch (which was a free case received from Abbott) can be pulled out and handed to someone if Alex is not going to be with me. I don't have to gather up the emergency supplies and transfer them to other places. I just pull out the pouch and it goes with Alex if she is with her Dad, uncle, grandma, etc. I like that I have my mini purse wallet for when I am on my own (although a rare occurrence) because I am not a big purse loving person.

Occasionally, Alex carries a purse when we go shopping together and she'll carry her meter in her own purse, but I'll still carry the bigger pouch. On her meter case, she has a small keychain that holds 4 glucose tablets so she always has her meter and some tablets if needed (she carries this when playing at friends houses etc.)

So...that's it in a nutshell! Now back to chasing highs...

Saturday, November 3, 2012

#NHBPM Day 3: I'd like to know about...

This is day 3 of the Wego Health National Health Blog Post Month. Today's prompt is "I don't know about this, but I'd like to."

Every step in learning to live with type 1 diabetes has been challenging and I haven't rushed or jumped into any one step. I'm terrified of making mistakes. So when we decided to get an insulin pump and we were asked about writing up a Continuous Glucose Monitor at the same time, I said no. It would have been brain overload. I was scared of the insulin pump because I didn't know the terminology (and it sounded very technical which it is). I was scared of it because it seemed like it would be more challenging to insert (I find it easier than shots and Alex thinks it is less painful). At any rate, I wasn't ready to take on 2 devices if we could even get a CGM approved.

But now, we have been pumping for 4 months and it has been totally awesome compared to shots for all of us. We've been fortunate not to have to many bumps along the way and in fact her numbers have been way better on a pump since day one.  So now...I think I'm ready to consider a CGM and actually and feeling pressed to get something done about it because we happened to have maxed out our insurance deductible and coinsurance for the year. Why not use that to our advantage if possible and get a CGM before the calendar year ends IF in fact they will let us?

So I guess I don't know much about a CGM but I'd like to. About all I know is that it's another tool in the diabetes shed that might help us catch lows or highs before they become dangerous. I'd really like that especially at night if I am understanding how these things work. Most nights even when she goes to bed at a perfect little 120 for her, by 2 AM she is between 250-300. We have tweaked and adjusted and tweaked and adjusted her basal settings at night and it doesn't seem to like anything we try. Either we ratchet it up and I go in at 2 AM and half the time she is 60. Or we ratchet it down and she is 250-300 at 2 AM. We are only bumping it up (or down) 10% at a time. We have played with the times. We've played with the settings. Diabetes does NOT play nice at night here. That leaves Alex AND I exhausted. Could a CGM let us sleep better on the nights it actually does play nice? I really don't know. And sometimes as of late when testing during the day, we'll be totally surprised with a number in the 40s and she doesn't even realize she was so low. It isn't like it's a daily occurrence but maybe once every 2 weeks. That's scary stuff to me - that she isn't even feeling it! Again, I don't know much about this CGM and if it will help. Here is what I think I know:

  • It will help us catch upward and downward trends before a dangerous low (or out of control high).
  • It won't replace blood testing.
  • It works with a wireless monitoring device.
  • We most likely want the Dex based on feedback from other Animas pumpers (we have an Animas Ping pump).
  • The sensors can be pricey but last longer than an infusion set (is it 7 days?)
Here is what I don't know:
  • Is it painful to wear? I've heard mixed reviews about the comfort level.
  • Is it difficult to insert (compared to the infusion sets)?
  • Is it reliable?
  • Does it allow you to sleep at night and only wake for alarms? 
  • How pricey are the sensors you have to buy?
  • How much is this going to cost us out of pocket?
  • How likely will our insurance company approve it?
  • How likely is our doctor to write a prescription for it?
  • Will Alex wear it or fight me on it?
I guess I need to bite the bullet and call our endocrinologist this week if I have any hope of getting more information and getting an order placed before our insurance rolls over to the new calendar year...

Friday, November 2, 2012

#NHBPM Day 2: Sailing Away

Today's Wego Health National Health Blog Post Month topic is to find a quote and use it as inspiration. 

My mother bought be a little plaque many years ago that simply said:

"We cannot direct the wind but we can adjust the sails" 

It was and is one of my favorite gifts because it represented something that continues to apply to my life...change...

I don't know anyone that likes to deal with major change. We all want to stay in our comfort zone even when our comfort zone isn't so comfortable anymore if that makes any sense at all. 

I can think of 3 pivotal events in my life that have shook me to my core and forced me to forge a new path...

My parents separation/divorce when I was 8 years old. 
I don't know any child who hasn't suffered in the breakup of a family. I was one of those naive kids who never saw it coming. I was young and sheltered. When my parents separated, we lost our home, our friends, our school, and everything we knew as kids. We moved out of state to a new place with a mom that no longer stayed home and became latch key kids. You know what though? I can't imagine my life if my parents had actually stayed married. Would I have learned what it meant to be a working mother? Would I have learned what it meant to WANT? We were pretty spoiled with a sense of entitlement when my parents were married and my father earned a good wage. When they divorced, we lived in a tiny apartment where I shared a room with my sister and wore hand me down clothes from cousins. My mother slept on the couch when she actually slept. We no longer took dance classes, music classes, etc I learned to be grateful. I learned to appreciate hard work in a way I question I would have learned had my parents stayed married. 

My own divorce from a long time high school sweetheart who I married at 22 and separated from within 3 months.
Most people who know me now but didn't know me as a young adult are surprised to learn I was once married (briefly) before. After my parents divorce, this was probably the biggest upheaval in my life to that point. I met my first husband in high school. We married when I graduated from college, a long engagement with lots of planning and thousands of dollars spent on a wedding. The details don't really matter at this point or for this story. Long story short, we were young and naive to the advice that sometimes you need to find yourself before you take steps to do the grown up thing called marriage. But divorcing was painful because I truly expected that my life path was set with this person. Suddenly that wasn't the case and I had no idea what to do with myself. It was this event that actually was the reason my mother purchased the gift of that plaque with the quote. I had it on my nightstand to look at every evening. As painful as this time period was, I have to say the period that followed was one of the most joyous. Being a young twenty something with the freedom to do whatever I wanted wherever I wanted was an exciting feeling. I forged a new career I would have never begun had I not divorced. I moved across the country and started a life in a wonderful exciting place that I now call my home. I met and married my second husband and had 2 wonderful kids. I can't imagine my life now had I stayed married and never found myself and frankly grown the heck up before having children.

My daughter's diagnosis with diabetes.
And so almost 2 decades later, here I am again adjusting the sails. If my parents divorce and then my own divorce shook me up, watching my child almost lose her life and now fight an incurable disease has shook me to my core. I know there is nothing I could have done to prevent diabetes entering our lives. I know I am relieved her life was saved. I know I am incredibly blessed that we live in a day and age that her life could be saved. But the day to day living with diabetes is exhausting and grueling on all of us. Learning to understand how each morsel of food effects blood glucose is complex and not always easy to follow. Thinking about things like drivers licenses, being left home alone, sleepovers, sports, etc is challenging to sat the least. Type 1 diabetes has changed the way we do things. And we can't change that it is a part of our lives. But like the quote says, we can adjust the sails. We can still live  life the way we want to live life...with adjustments. And like the other events mentioned, there are things about my life that have changed and diabetes as much as I despise it HAS opened my life up in new directions. I'm learning what it means to be healthy. I'm learning what it means to be a healthy role model. I'm learning patience. I'm learning compassion in a way I never have before. I'm learning that while my daughter can be super sensitive and super dramatic, she is also super strong and super brave. 

I'm kind of sad because at some point in one of our moves, I lost that treasured plaque. But I've never lost the meaning of that plaque. And that was the most important part of that gift. Sometimes change happens. Don't go down with the ship. Just adjust the sails and keep on sailing.

Thursday, November 1, 2012

#NHBPM Day 1: Why I Write About My Health

Okay so I'm not some super awesome blogger out there. I'm just not. I read various blogs out there and they are actually super awesome. I hesitated to attempt this challenge but decided why not...so I am going to participate beginning today in the Wego Health National Health Blog Post Month. challenge for November as a means to challenge myself AND perhaps find a low key means to support November being Diabetes Awareness Month. Each day, I am supposed to write about a topic as outlined from NHBPM so here goes with today's question: Why do I write about my health?

When Alex was diagnosed with Type 1 diabetes last year on December 20, 2011, I felt stunned and utterly fearful. When I am scared and frustrated I tend to babble over and over again to the same people. Repeating events in my head helps me sort through my thoughts and figure out a way to get through a problem. Alas, this particular problem isn't easy to sort through and just move on from. Writing out my feelings has helped me annoy my friends and family less AND allows me to truly sort out my emotions and form cohesive thoughts that might lead to something productive out of my fears, frustrations, anger, and even excitement or happiness that comes with the road we have traveled now for 10 months.

So I write about Alex's health...this is true. But it isn't just her health. Writing about her health and reflecting on what it takes to maintain her health has led me to reflect on MY health in the process. Who am I today? Who do I want to be today? I want to be a mother who can hike with her children in the beautiful pines of northern Arizona without wondering if it's doable because of my lack of endurance. I want to be the mother who teachers her children that food is not a comfort zone. Sugar is not a cure for stress and anger. I want to be a mother who doesn't feel judged when I tell someone my daughter has diabetes because these days when I tell someone who doesn't know us, they make assumptions about Alex having diabetes because of MY weight. I want to be a woman who looks in a mirror and feels good about what she sees. I want to be a woman who can shop at any clothing store I desire to shop at. I want to be a woman who sees herself as a healthy person.

Writing about my journey to become healthy and Alex's journey to live with diabetes helps me to own up to what I need to be doing to keep my goals in check. Has it helped? I think so - Alex's A1C is the lowest it's ever been and she has grown leaps and bounds in her self care. I have lost almost 30 pounds and am seeing the results of a lot of hard work (with lots more hard work to go).

This is why I write and will continue to write. I write for me. I write for Alex.