D blog week day 4

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we've done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)


After writing yesterday's post and reading many other blogs, I admit I was feeling a little down.  So today its time to look at the other side of the coin. There are many things I do to get though a hard day.  The one time I seem to be able to forget about diabetes is when I am exercising.  I go to a Dance Fit class (think Zumba on steroids, with planks, burpees, jacks, free weights, jump squats and more).  I think my brain doesn't have time to think about anything else during that hour. 
  
  But the one thing that gets me through a hard day more than anything is when I hear M say "I love you Mama!"

D blog day three. What brings me down

Our topic for today is What Brings Me Down.  May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)




  Diabetes has been in our house for a little over a year know.  I am much better emotionally now than I was a year ago.  However there are still those times when diabetes brings me down. Here are a few.

When I think that less than 100 years ago T1D was a death sentence.

When I think what life would be like without my sweet girl.


When I think that in some parts of the world T1D is still a death sentence.


 When my daughter has to come out of dance class because she feels low.


 When I have to explain to my daughter that right now is not a good time to eat a certain treat because
     her blood sugar is too high.
 
When I am looking up carb counts on my phone at a restaurant and people assume I am being rude.

When I look at pictures of her before diagnosis.  (In fact I haven't gotten back to scrapbooking because of  
      this)

When I think of future complications.

When my 8 year old is already worried about leaving home to go to college because of her diabetes.

When I realize that in 10 years or so I will not longer be dealing with T1D, but my sweet girl will have to
    deal with it the rest of her life.
         

D-blog week day 2...Wild Card, Tell me a story

   Today's original prompt was to write a piece of poetry about Diabetes.  I decided instead to use one of the wild card topics. I know it says to write about a supply you use every day, but I chose to write about a supply that I hope I never have to use.

Write a short story personifying a diabetes tool you use on a daily basis. A meter, syringe, pump, pill, etc. Give it a personality and a name and let it speak through you. What would it be happy about, upset about, mad about?  (Thank you Heather of Unexpected Blues for this topic.)




   Hello.  Let me introduce myself.  I am one of  my girls many diabetes supplies.  I am the one thing in her bag that she if afraid of.  She simply calls me "the Big Red Shot"  My real name is Glucagon.  Out of every thing that she carries I am the one she has never used.  That does not mean that I am not important.  I know Insulin is the main superhero that she uses, but I consider myself to be a superhero also.  She just hasn't needed me.


   I sit at the ready watching her dance and swim and play.  I get carried in lunch boxes, and purses and backpacks.  I go everywhere that my girl goes.  I have been to school, on field trips, camping and to amusement parks to name a few.  Every once in a while my girl's mom pulls me out of the bag to show me to someone and tell them how to use me in an emergency. 


   Two times this year I was taken out of the bag, ready to assist my girl.  Once was at a swim party when her blood sugar dropped to 33 and the other when when she had a stomach bug.  Both times the every day heroes juice box and glucose tabs saved the day.  But I was ready.   I will always be here watching and ready for my turn to save the day.



  

    




 

D-blog week day 1. Change the world

 This is my second year participating in Diabetes Blog week.  Last year I enjoyed reading everyone's blogs and seeing different opinions and statement on the same topic.  Can't wait to see what is written this year. 

 Day one's prompt is Change the World
   Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

  Anyone who knows me knows that I am not very outspoken.  I am not one to get "fired up" about things.  But having a daughter, especially a daughter with Type 1 Diabetes has change things.  I will advocate and fight for her and speak up for her, because at this point she cannot do it for herself.

   I fight the insurance company to get the supplies she needs to stay alive and healty.  I am her advocate with the school, making sure she is safe at school, on the bus and at any after school activities.  I educate teachers at school, daycare, dance and Sunday school about Type 1 diabetes so that she will be safe when in their care.  I educate her friend's parent and family members so that they will feel comfortable when she is at their home.   I participate in JDRF fundraisers so hopefully someday there will be a cure.

   I teach my daughter that diabetes cannot stop her.  I teach her to care for herself so that she can be independent.  I teach her that she can do anything and eat anything that she did before diabetes .  I teach her that diabetes is not her fault or my fault or anyone's fault. 

   I may not formally advocate for diabetes, but I feel I advocate and educate every day.  Just on a smaller scale.

Superbolus

     As for most people weekday morning are usually a rush here.  Getting ready for work and school, packing lunches, making sure M has all her diabetes supplies in her purse for school...   M usually likes to sleep as long as possible so that only leaves her time for a breakfast that she can eat fairly quickly.  Most mornings this means a bowl of cereal.  The problem with this breakfast is that about 2 to 3 hours later her blood sugar spikes to almost 300, followed by a rapid drop to the point of being low before lunch.  This is a big chunk of her school day where she is not in range and probably not feeling her best or able to learn as well as if she were in range.  We have tried different basal settings and different insulin to carb ratios and nothing works...until now!

     I read this week about the superbolus and thought this is something that might help M.  Basically I take the next 2 hours of basal, and that to the suggested bolus for her breakfast and then turn off her basal for 2 hours.  This is how the superbolus works.  In the morning M's basal rate is 0.35 units/hour.  To make thing easy lets say that her breakfast bouls for her cereal is 2.00 units.   Instead of 2 units I add the next 2 hours of basal and give her 2.70 units instead.  Then I turn off her basal for the next 2 hrs. 

   We did this today with great results.  Her breakfast spike was only 40 points and she was a happy 102 before lunch.  I will continue to try this and see if it keeps working for her!

Lesson Learned

     There has been much on the news lately about the weather.  The sub-zero temps, the snow in the south and the ice in between.  Every time I hear about people that are stranded in their cars I can't help but think if any of them have T1D, or are with their children with T1D.  What do they do if stuck for a long period of time?  Do they have enough with them to treat a low? This weekend I found out exactly what it is like to be stuck in the car with a kid with T1D and limited food supplies. 

   I was taking M and her best friend KP snow tubing.  The roads were a little snow covered, but we live near the snow belt so a little snow doesn't bother me.  We were on the interstate when a saw a police car and flares, with the officer signaling to people to slow down. We slowed to a crawl and then a complete stop.  We hadn't eaten lunch yet because we were planning to eat when we got to the snow tubing place.  At this point M says, "Mom I feel low."  She checks 58.  I grab my purse which is usually stocked with snacks, only to realize that I have not replaced snacks in my purse for a while.  I have 8 glucose tabs and 2 granola bars.  We have a half  bottle of water in the car.  I give M 2 glucose tabs. I should have given her 3 but I was rationing.  I check the traffic report on my phone as find out that there is a multi-vehicle crash ahead of us.  We are going to be here for a while.

   40 minutes later, M says she feels low again. She is 78.  Also both girls are saying they are hungry.  At this point KP tells me she didn't eat breakfast this morning.  I have 2 hungry girls, one with T1D and 2 smooshed granola bars.  Do I save them both for M, or do I give one to each girl assuming we won't be stuck long?  I give one to each girl and they share the water. 

   Over all we were stuck for close to 2 hours.  I know this wasn't a long time.  But with a kid with T1D in the car and limited supplies it felt like forever.  I can't imagine being stuck much longer.  We made it to the snow tubing place and had a great time, complete with a hot chocolate break.  I also stopped and got some snacks to have in the car for the trip back!  I learned my lesson.  I will always keep plenty of snacks a glucose tabs in the car at all times!

One Year

     One year ago today M was diagnosed with Type 1 Diabetes.  In that year she has poked her fingers at least 3,285 times to check her blood sugar.  She had 1,256 shots of insulin before switching to the pod.  Since starting on Omnipod, she had had 18 pod changes.  A pod change is not simply sticking the pod on her skin.  A needle pierces her skin and a soft cannula is left in her that the insulin goes through.

    Today is an ordinary day for M.  She went to school like any ordinary 7 year old, she is doing her homework right now like any ordinary 7 year old, and she will go to her dance class later and dance just like the other 7 year olds in her class. We will go to Panera oour after dance class tradition and she will eat soup and a cookie just like any other kid. (Yes, she can eat cookies!)

     Less than 100 years ago Type 1 Diabetes was a death sentence.  Most kids with T1D did not live a year from diagnosis.  Even though there is no cure for T1D, I am thankful for the insulin and technology that keeps my daughter alive and lets her have these ordinary days.

   

This Time Last Year

   We are soon approaching 1 year since M was diagnosed with Type 1 Diabetes.  February 6th to be exact.  There were many times in this past year that I couldn't help but compare this, M's first year with diabetes, to the previous year, her last year without diabetes.  These are just a few of the times my thoughts started with, this time last year....

     Easter:  This time last year I didn't have to worry about what was in her Easter basket.  I didn't have to worry about what candy she would get at the egg hunt.

     Her Birthday:  This time last year I didn't have to pull her aside, while all of her friends continued to play and have a good time to check her blood sugar and give her an injection of insulin.

     Her Dance Recital:  This time last year I was able to watch her dance on stage without thinking, does she look low... does she seem high?  I didn't have to worry about the 3 plus hours she would be backstage without me
 
    The Summer:  This time last year was carefree.  She could swim for hours or run on the playground with no worries of treating a low blood sugar. Snacks after soccer games were not a cause for stress as I didn't have to tell her that she could not eat right now because her blood sugar was too high.

   Back to School:  This time last year my back to school list did not include diabetes supplies.  I didn't have to meet with the nurse and teacher before the start of school.  This time last year I didn't even know the school nurse's name.

    Christmas:   This time last year I didn't have to give her her shot of Lantus while we were on the Polar express train ride.  This time last year I didn't have to figure out the carbs in the cookies I was making.  This time last year I didn't have to guess the carbs in foods at holiday parties.

  This time last year I didn't know how an insulin pump works, I didn't know what a CGM was, I didn't know how to carb count.  This time last year my daughter didn't have to poke her fingers up to 12 times a day or inject herself with insulin.  This time last year I didn't have to watch my daughter cry because the sight where we put her pod on hurt.

   As we approach this last week of January and into February, I think of this time last year.  This is when I first saw the signs of diabetes.  M was constantly thirsty, she would take two drinks in her lunch.  She was also going to the bathroom it seemed like every hour.  She was always hungry, and when I weighed her I was shocked at how much weight she had lost. This time last year is when I knew.  I knew she had Type 1 Diabetes before I even made the phone call to her doctor. 

  The most frightening thought is that this time last year, my daughter could have died.  If I hadn't recognized the signs of diabetes or made that appointment with her doctor, I hate to think of what would have happened.   So when February 6th come along, I will try not to think that this time last year my daughter was diagnosed with type 1 diabetes.  Instead I will try to think that this time last year I saved my daughter's life. 


 

Ice Cream

  Just had to laugh at what M asked me for the other night. 

  Instead of a bowl of ice cream she asked if she could have a BOLUS of ice cream. 

   If only I could bolus her with ice cream instead of insulin!

Omnipod.. One month in

   M has been on the Omnipod insulin pump for a little over a month now.  For the most part we love it.  It has given her more freedom with when she eats.  We see less spikes in her blood sugar because we are now giving insulin for snacks.  And it is super easy to use!  M has been able to go to her friends house, call me with what she is going to eat, and is able to check her blood sugar and bolus on her own for the carbs that I tell her to enter in. 
  
    The only thing she doesn't like is pod change days.  She says it hurts more than a shot but does say it is better to only have to do it once every three days.  We haven't tried and numbing cream yet, but I offered it to her and she did not want to use it.  As long as she gets to push the button herself to insert the cannula it goes fairly well.

   We are having trouble getting her basal rate set right.  She started on the pump over Christmas break when she wasn't as active and her blood sugar reading were great.  Since M has gone back to school, and dance, and gymnastics she has been having a lot of low. (I actually just had to get her juice for a low as I was writing this!)  I have decreased her basal and set temp basal decreased for activity.  But she still is going low
  
    On the other end, I have  noticed that her blood sugar tends to rise near the middle to end of the third day of the pod.  I asked around why this could be.  Some people said that Humalog is more sensitive to heat and if she is active and hot may not work as well by the third day.  We have to switch to Novalog next time I refill prescriptions (our insurance no longer covers Humalog) so I will see if this makes a difference.

   I did have to give her a shot on Sunday (third day of pod).  He blood sugar kept rising, when it was close to 500 I told that I needed to giver her a shot because I thought something was wrong with the pod and then I would change the pod.  Well to put it in her words she "freaked out".  It's amazing how after just one month she does not want shots anymore.   When I pointed this out to her she decided that changing a pod every three days was not so bad after all.

Bolus Worthy

Guess the carbs

Thirty Seven

   It has been a rocky 2 weeks blood sugar wise since M started on the Omnipod.  In retrospect the week before Christmas was probably not the best time to start on a pump, but I thought it would be good that she would be off school to get adjusted to it. 
  
     The first three days were beautiful. In range blood sugar numbers.  Then it was pod change day.  I don't know if it was something I did wrong or if there is just a learning curve but M had two pod fails within three days.   She was not a happy girl. (Since then we have had no more pod fails -- knock on wood)
  
    We were seeing numbers near 400.  Those kind of numbers scare me.  M's doctor had us make some changes to her settings on Christmas Eve.  Then the day after Christmas, M had a blood sugar number that scares me even more than the 400's.

     We were having a " 'Jammie day".  Just staying at home staying in our PJ's all day and were watching movies and playing with her new toys from Christmas.  She had just eaten a snack and we were snuggled on the couch watching a movie when she fell asleep.  In the back of my mind I thought maybe she is low, but I also knew she was tired from Christmas Eve and Christmas Day.  About an hour and a half later I finally woke her up.  She seemed confused.  She wanted to eat the snack that she had just eaten before she fell asleep.  She also didn't know what I was talking about when I asked her what she wanted for dinner.  She wasn't making sense with questions she was asking me.   Before diabetes I would have thought she is just still tired, but not anymore.  I checked her blood sugar 37.  This is the lowest she has been.  Physically she was functioning fine, but not mentally.  I have seen her fingers shake when she is in the upper 60's.  But there was no shaking this time.  Just the confusion.  What would have happened if I had let her sleep longer.  I hate to even think about it.  What caused her to go low?  I will probably never know.  Since the low none of her pump setting have been changed and she has had no other lows (knock on wood again!)

Early Christmas Present

     Look what M got the week before Christmas!

    So far she has mixed feelings about the pump.  She likes not having to get shots and the freedom it gives her with what and when  she eats.  She does not like changing the pod.  She also had a pod fail on her first pod change day so I had to change it twice in one day.  She said next time she wants to try to do everything herself.  Hey, whatever makes her feel more comfortable with it.
    We even made a small Omnipod and PDM for her build a bear!

Still waiting for a pump

   We started the process of getting M on a pump on September 26.   At the class they told us she would be on a pump in between 2-4 weeks.  Two months later and still no pump.  We have run into several roadblocks.  The first was waiting for Omnipod to call us back.  Not sure why that took almost 2 weeks.  Then it was waiting to see if the DME company that our insurance covers was going to carry the Omnipod.  another 3 weeks to find out that yes they will.   Then the problem was getting the paperwork from M's endocrinologist.   In those 5 weeks M's Dr had left the practice.   The Dr that she will be seeing from now on would not sign the paperwork.  She stated that M was not her patient.  We don't follow up again until December 10th. It took another 2 weeks to get this straightened out. 

     Finally with all the paperwork we need comes the insurance authorization.  I know our insurance and I know this will take a long time.  Then on Saturday I get a call from Omnipod.  Seems our insurance needs more information.  They want the notes from M's last 2 endo visits, her last two A1C labs, and a month of BG logs.  Really????  They are going to take the time to look at all of that!  Anyway, being a Saturday there was not much I could do to get the notes from the Dr.  So that is what I will be doing today.  I just hope we don't get a hard time from the Dr.s office again.  The lady I spoke with from Omnipod said if I get her the information on Monday,  we could possibly have the pump by the end of the week.  Fingers crossed that this is true and M can be on her pump before Christmas!

The Fall...(and I don't mean Autumn)

     It all started with making a gingerbread house.    There is a Christmas light display at a park near us that has a building full of gingerbread houses that kids in local elementary schools make.  This year M has decided to make a gingerbread house for this.  (She chose to make her house into a beach house with the ocean and fish).  Anyway as we have to have this done by November 14th we started on it yesterday afternoon.  As we were working on it I noticed M kept licking her fingers that had icing on them.  She was having too much fun and I decided to just give her a correction at dinner.   I knew she would be high  but I didn't expect the 355.  Just how much of that icing did she lick?  Just to be sure I had her wash her hands and recheck.  Yep it was right.  I gave her 5 units to cover her dinner and for the correction. 

    She was fine most of the night.  I checked her before her bedtime snack 127.  Ahh, that's better.  
  
    Ten minutes later

   M:   Mom, I feel low.
   Me:  I just checked you, you were fine.
   M:   I feel really bad.
   Me:  Ok.

   I check her.  65.  What!?!?!  No wonder she feel bad.  That fast of a drop in 10 minutes.  Out comes the Halloween candy.  15 grams of sour patch kids and 15 minutes later.  55!!!.    Now she was feeling really bad,  she didn't even want Halloween candy.  "just give me juice" she said.  Finally after the juice 89.
She had her bedtime snack and at 1 am was 200.   Still she woke up this morning at 64.  Back to the Halloween candy!

   I'm not sure why she dropped so fast.  Did she not wash all the icing off her fingers?  Did I over correct? Next time we work on the gingerbread house I will be sure to scrub those little fingers of hers!

Flu shot

   Since we have made some insulin adjustments after M's last endo visit her blood sugars have been great.  Pretty much nothing over 150.  Unless ironically you count the day of the JDRF walk when she was in the low 200's, but I chalk that up to excitement. 

   Then on Friday M got her Flu shot.  Went to bed with a reading of 134.  Woke up Saturday morning at 198.  What!  She is consistently under 100 in the morning.  Then at lunch somewhere in the mid 200's. (She has her meter with her at dance tonight so I can't check the actual number.)  We corrected and went on.  At dinner time a whopping 372!  She ran in the upper 200's the rest of the night.  Sunday morning she woke up with a low of 66.  What was up with Saturday?  The only thing I can think of is the Flu shot.  I researched it and most of what I found said the the flu shot will not affect blood sugars.  But then again YDMV (your diabetes may vary.)

Getting ready for a pump!

      During M's last endo visit she said she felt we were ready to start a pump.  We attended pre-pump class this week.  It was a class that went over the basics of pumping and gave an overview of the pumps M's Dr prefers.  I was worried because I had already done my research and M and I have looked at some pumps, so we were already fairly certain that the Omnipod is the right choice for her.  I have read that some pediatric endos don't use the Omnipod and when I asked at our appointment our endo said, you will see all the pumps we recommend at your pre pump class.

   When we walked into the room all the pumps were on a table.  There it was and Omnipod.  I could tell M was happy because we had been thinking about a second choice (animis ping was her second choice).  But she really wanted the Omnipod because of it being tubeless.

    After the class I had to take a test on carb counting and on pump basics.  Then the next day I called the rep at Omnipod to order M's pump.  Now to wait to see what our insurance will pay.  Our insurance is usually very slow to give authorization.  I think M thought she would get her pump the next day.  I told her lets hope to have it by Christmas.  Wouldn't that be a great Christmas gift!.

   Today was also of JDRF walk day.  We raised $1,102.  It was a beautiful day for the walk.  M enjoyed getting her face painted and picking up all the free stuff from the various vendors.  I participated in the Tial Net Study, and we even scored two sample vials of Humalog!   We had a great time.  I will post pictures later!

Endo visit...The good, the bad, and the ugly

   This morning M had her second visit with her endocrinologist.  I have been concerned because her numbers have been creeping up this summer.  I also wanted to talk about getting her started on the pump before the end of the year.  There is rumor or our insurance at work changing and I am worried about what our coverage will be next year.

   I'll start with the bad.  M's A1C was up.  I knew it would be.  It was not up as bad as I thought it would be though.  Basically my suspicion that her "honeymoon" is over was confirmed.  Some adjustments were made to her breakfast ratio's to see if that helps and she is mainly high before lunch.  Will have to see if that helps tomorrow.

  The good.  We are signed up for pre-pump class on September 26.  This does not guarantee that M will be pumping by the end of the year but it is a step in the right direction.

  Now the ugly.  M's endo was concerned about her scoliosis.  She wasn't sure if it was getting worse.  As this is not her area of expertise she referred us to  pediatric ortho.  Isn't diabetes enough for M to deal with.  Of course I have been up looking at scoliosis treatment.  It is basically bracing or surgery if the curve is bad enough.  Hopefully her's isn't bad enough for this and we will just have to have it checked every 6 months.  If she needs a brace I hope she will handle it as well as she's handling diabetes.

What Low Feels Like

   I recently bought M a used pair of roller skates.  They are the old-fashioned kind like I had as a kid, not in-line skates.  She has been having a great time skating on our nice smooth newly paved driveway.  She was doing good and wanted to roller skate up and down our street.  We live on a dead end road with no traffic so I don't have to worry about cars.  I was walking beside her and the road was not as smooth as our driveway so I said "do you feel vibrations from the road"  She said "No, I feel like I'm low."  I was ready to grab her meter when she said  "I'm not really low, the road just makes it feel like it does when I'm low.  It goes away when I stop skating."  Though it was interesting to get a little of an idea of how she feels when she is low.

Hershey Park

   I haven't been on here in a while but between vacation and getting ready for back to school its been busy.  We recently took a trip to Hershey,PA and Hershey Park.  We took our 10 year old niece V with us so M would have someone besides Mom and Dad to ride on rides with.  As I approach a certain milestone birthday, I find I can't handle spinning rides anymore.

 We stayed in Harrisburg, a short drive to the park, and got 2 day tickets to the park.  The tickets include Hershey Park (which also has a water park inside it) and the Zoo.  Chocolate world is next to the park.  There you pay for the individual attractions that you want to do.  We did the 4D movie and Chocolate tasting.  When you buy your park tickets ahead of time you also get what they call a preview night.  You can go to the park the night before for about 3 or 4 hours.  This was great in letting us get to know the layout of the park so we could be ready to tackle the park and T1D the next two days.  We also got to do a few rides and M discovered her favorite roller coaster the Wild Mouse.

  I think I packed enough D supplies and insulin for a month for this 4 day trip. But when you take a 7 year old with T1d to the "sweetest place on earth" you never know!  We had a great time in the park and also enjoyed the water park at temps were in the upper 80's.  I did not ask about anything like a guest assistance card for M and we did OK without it.  The do offer a fast pass that you can buy for $50 but is just for roller coasters.  M isn't a big coaster fan, so for us this wasn't worth it.  Most of the rides she and my niece chose to do had shorter lines.  I think the longest wait was around 30 minutes.

  The hardest part to manage was the food.  Simply put the food at Hersheypark is terrible.  Basically bad fast food.  Chicken strips, hot dogs, hamburgers, mac and cheese...  They do have one sit down restaurant where we did eat dinner one night and I was never happier to eat a salad!  After our first day we learned not to eat lunch in the waterpark area.  There are very few choices with long lines and once you are in your bathing suit you are not allowed in other areas of the park unless you change.   We waited in line for over 30 min for a hot dog and fries only to have M tell us she didn't like the fries..  of course after I had given her insulin for them.  It was hard to find her something else to eat where I wouldn't have to wait in line for a half an hour.  I did carry glucose quick sticks with me for lows but I really did not want her to eat them for her lunch!   The second day we were there we learned our lesson and had lunch before going into the water park area.  Minimal lines for food and more choices.  M and V were happy to find pasta.

  We had a great time and I think all the walking helped keep M's blood sugars in check and what better way for a girl to treat a low than with some cotton candy!