Losing and Loving It

Eden is SO busy!! This incredible young lady has energy abounding!!

Only a few days from the finish line of finishing her University Education, she has her nose to the grind. BUT….she has made the time to share with us more of her tips & tricks on her journey to losing weight in a healthy way while living with Type 1 diabetes.

Here is some more insight & inspiration….thank you Eden!!

“Hello Everyone,

Since I had an eventful couple days, I have not been able to post (after Saturday you will get one from me daily I promise!) So I weighed myself today and I lost 1.5 pounds….after a major plateau for a couple weeks and I am finally 172 pounds!!!!! SO HAPPY! Let me tell you I am learning a lot from about my own body on this journey!

I even learned a couple things this week.

First thing, I learned that cutting your sweetener intake ACTUALLY reduces your waist line. Now I am sure most of you use Splenda on EVERYTHING…believe me I did. On average I would use anywhere from 3-12 packets a day. In the last couple of months, I have been losing weight one week and having a plateau for 4…but as soon as I started using Truvia (Stevia) and using 1 Splenda with it, I started to see a change again. So if you can mix the Stevia and Splenda up, or just use Stevia.

Second thing, cheat days! Now lets talk about those glorious days ha ha. I follow a program where I do not eat very much gluten, and I eat 2 carb choices a day (these are usually a grain or sweet potato etc). On my program I should not have cheat days, and most people say it’s a lifestyle change and you can never have another regular cookie again. YEA RIGHT! For me (like today) I need a day sometimes to give my body something it wants because it makes me follow my program and see progress. Today I had 3 carb choices, a piece of cake and a small brownie (a bit too much sugar, but oh well). I NEVER have this every single day, and I haven’t had this much since Christmas. You do not gain all your weight back on because you had one bad day. You gain weight because you are not eating right the rest of the time. So if you splurge, do not quit! Get back on that horse the day after!

Third thing, people are so uneducated about Diabetes. Yet again in my town, I was taking insulin (by pen) in my stomach before I had my lunch on Friday…and someone came over to me and asked why I was doing a needle in public (I have actually been asked this a couple times). I explained I was Diabetic thinking she was curious, so I explained it further. During the first couple seconds of my speech, she looked like she wanted to hit me! After my speech she apologized, and thought I was taking a form of illegal drug in the local coffee shop when her child was present. I was like nope and kind of laughed it off, but I was shocked! I also have had the stupid arguments with people I know who were trying to educate me about my own disease saying it’s because I was overweight and ate too much sugar….Anyone else have this? Yes I could slap these people. If you have friends and family who know you have diabetes, maybe start educating them so they can educate others!

Sorry I had a long rant today HAHA.

Eden”

Why?!?

Did you ever go to bed with a normal or near normal sugar but wake up the next morning high? You increase your insulin or talk to the doctor about it & he raises your oral diabetes medication & it continues to go high. Why?!? What is going on? Among the many frustrations to experience, what appears a simple fix becomes a complex mystery.

Kurtis is in Grade 7. It is about late September. During that time, as most kids are, he is very active, back to school & still not ready to harness the energy he had from summer holidays. He plays football with his friends at every recess. He plays hockey in his local league. At that time he is in power skating to ante up his hockey skills for the upcoming season, with the primary reason to keep him active. When he isn’t at hockey after school he is outside jumping on the trampoline or catching frogs. Aside from sitting in a classroom his days are full of activity.

During that time Kurtis is on insulin pump therapy. It is very easy to manage him on this. Predicting trends in blood sugars is easier than injections. Between decreasing basal rates & temporary basal rates, I feel I am in control of his active lifestyle.

Within that time, there is a period of weeks where Kurtis is going to bed within the safe target for his age but waking up high. I automatically assume he is growing & needs more insulin. What does any parent do? Increase the overnight dose.

With Kurtis being on an insulin pump, I don’t feel the need to set my alarm every night to check him. If there are days where he is having multiple lows, I set my alarm to make sure he doesn’t have more through the night. Otherwise, I feel confident sending him to bed at a target blood sugar, he will wake up within a reasonable target in the morning.

One morning this is not the case.

At that time I worked for Novo Nordisk. I put in an average of 50-60 hours a week. I did a lot of driving. Working as a full-time Mom in a sales career, living & managing my own Type 1 diabetes & raising a son with Type 1 diabetes & keeping a balance for my daughter was very challenging.

This particular morning my alarm goes off. I am exhausted. As I hit the alarm, I say to myself, the kids need to do a few things before I get up with them anyway, it’ll be okay. The alarm goes off one last time. My feet hit the floor. As I stumble out of my bedroom into the Great Room where Cayla sits at the Breakfast Bar eating her breakfast.  I hear Kurtis’ alarm going off. I ask Cayla if Kurtis is up. I think to myself, “I don’t hear the shower?”. She responds, “It’s been going off for a while now, he won’t shut it off, he won’t get up.”

My heart starts to pound. My concern is overwhelming. At this point, Kurtis is not at the stage to sleep deep enough through an alarm.

Kurtis’ bedroom is at the end of the hall. His bunk bed is against the wall directly in front me. As I rush in the room, I see his back facing me. The alarm is still going off. I know something is not right.

I go over to him. He is a funny colour. My heart is pounding. I shake him gently & say “Buddy” (his nickname). His arm flops over & I see his face. His eyes are rolled back in his head & there is a lot of saliva coming from his mouth. There is not a moan or a groan. He is lifeless. There is a pool of vomit in his bed. My body floods with a warm rush, a pulse so strong I want to scream. I think my baby is dead. It seems so cold, but I check his pulse. It is barely palpable & fast. He is cold. I scream. I scream so loud. I yell at Cayla to get her father. I don’t have to explain. She can tell by my voice & what she is witnessing. I keep him on his side. His father rushes in and picks him up. He holds him on his lap while I run to grab the Glucagon. My hands are shaking so bad I can barely get the needle into the vial to inject the saline. What seems like forever, I pull the syringe out of the vial & plunge it into Kurtis’ leg. He’s not moving, he’s not talking, his eyes aren’t open. I pray, please God, please, I can’t lose my baby. I am trying to keep up my composure for Cayla. She is apologizing to me. She feels bad she didn’t check on him. I say “It’s okay honey, it’s okay.” as I try not to cry. Who do I call first…Kurtis’ Diabetes Educator’s home, not 911, but her home. Why? I don’t know to this day. At that point I have lost all sense. When she answers I cry to her “Shay, he won’t wake up, how long does it take?” My hands are shaking so bad I can barely keep the phone by my ear to talk or listen. She asks me, “Have you called 911?”. I feel so stupid. Me, a nurse, who has worked in critical care. I hang up & call 911. We live in the country. It takes 30 minutes for them to arrive. About this time, Kurtis is beginning to make sounds. He is trying to get on his feet but doesn’t have the strength. The lights are on but nobody’s home. Shortly after, Kurtis is hospitalized. It takes almost a day before he becomes aware of his surroundings & his Mom. I knew my Kurtis was back when he opened his eyes after who knows how many times confused & unaware & says “I’m hungry”. I knew by baby was OK!

There is not a day that goes by that I don’t thank God that He left him here with me. Days, weeks, months & years later, I tell Kurtis that God kept him here for a reason. He has a purpose. As we all do living with diabetes (& those who don’t!). Weeks & months after I would be driving to a city in my territory to call on customers & I would visualize Kurtis lying in his bed, looking dead. I burst into sobs.

My discovery with what happened to Kurtis is that he wasn’t high all night. He was experiencing the Somogyi Effect. He was going low in the night due to all of his activity but his liver was overcompensating giving him such a surge of sugar to compensate he woke up high in the morning. That day, his liver had no more sugar stores left to save him from what happened.

I share this very emotional story with you for a few reasons.

1. Don’t assume. Nothing, not even an insulin pump is predictable with diabetes. When I worked in the Intensive Care Unit, I was taught to look at the patient not the the machine. (Although, don’t override the pump all the time that is telling you changes on the pump need to be made)

2. Set your alarm for 3 am & test your child/teens sugars for 3 nights.  It’s like fishing…you’re trying to ‘catch’ a low.

3.   If the sugar is high in the morning don’t assume it’s because he/she is high all night. If your child is on injections or a pump that does not give the technology to offer Continuous Glucose Monitoring to decide what’s happening, there is technology available that allows your child to go live with their sugars for 6 days that your diabetes clinic may offer which will help you & your diabetes team to find out what’s going on over night 24 hours a day for 6 days.

4. When kids are as active as I described with Kurtis, compensate for that. Whether your diabetes team has advised extra carbs & protein at bed or decreasing overnight insulin.

5. Journals rock!! As busy parents working long hours & being all that for our kids, we lose track. But, we don’t realize it. We think we are status quo, but eventually something has to give. A journal will tell you what’s really going on. It’s the story you think you know but  because I’ve been there, you really don’t.

I share my experiences because I learn from them & they are in the past. I write these blogs because if I can save one child & one parent from going through what I did, I have done what I have set out to do.

How to Prove You’re Cool with Diabetes

“Did you make any friends?”

After the first day of Kindergarten or starting a new school there are many questions to ask. The answers are usually pretty straight forward. Kids usually come home from school telling of events that occurred with their friends. Some days it is the story of “So and so is not my friend anymore, they did this to me…” or “Look at the picture so and so made for me.” or “So and so gave me their cookies and I traded them my chocolate milk.”

Children are compassionate and caring. They are resilient. Children are honest but also cruel.

As a Mom, I was witness to a mob mentality with a group of Grade 4 boys.

As I mentioned in my blog yesterday, after speaking with the children in Kurtis’ class, it seemed some of the kids would play with him. He now had a small group of friends. Once they knew they couldn’t get diabetes by touching him, they were okay with playing with him.

In October of his Grade 4 year I started Kurtis on an insulin pump. Thankfully his teacher was incredible. She was a classmate of mine from primary and high school. She was very proactive in Kurtis’ care and the learning curve associated with learning how to pump. At that time I worked part-time in the hospital as a nurse in the Intensive Care Unit. The teacher knew she could call me at work or home for questions or concerns. The calls initially were frequent.

Upon starting Kurtis on his pump, I opted to start him on an angled teflon infusion set. I tried a straight-in set but they kept bending causing sudden, extreme highs. I felt the angled set would give us more consistent results. The introducer needle was large enough, depending on where it was inserted, it could be quite uncomfortable. I put EMLA cream on his site one hour before inserting so he wasn’t feeling the discomfort. It worked beautifully.

One afternoon I received a call from his teacher. She sounded excited. She wanted to tell me that Kurtis’ infusion set had ripped out during recess. She was so proud of him. There was no EMLA cream in his kit. Kurtis decided he would insert the Silhouette without it. Mrs. Sperry was awesome. Instead of sending him down to the office or nursing station to change it, she would over see the change. The class was curious to watch.

At this point, the ‘cool’ boys were not as interested in playing with him. This bothered Kurtis. He wanted to play the sport games they played at recess. He didn’t want to just walk around the yard, he wanted to be active. I told him although I understood his need. I also encouraged him to start his own games in the yard, but he wanted to play with the athletic, cool boys.

During the phone call I was told that the kids were so impressed with what Kurtis had done. They talked about it all afternoon. Kurtis had put a really big needle in his stomach. He was SO brave.

Not one Certificate of Achievement could ever make Kurtis feel as proud and accomplished as that day. Days and weeks later, the Grade 4 ‘cool’ boys began to invite him to play at recess. The icing on the cake for Kurtis.

As a parent I had mixed feelings. To me it was a form of intimidation. A child having to go through a form of initiation to be friends with children so he could gain the acceptance and confidence he needed to feel good at school. I understand this happens with all children to some degree, with or without diabetes. I have seen it in a milder form with my daughter.

I had to accept that this was part of learning and life with diabetes. Since those days of Grade 3 and 4, I have hoped and prayed that Kurtis would learn that he should never have to prove himself to anyone because he lives with diabetes. It’s hard to convey that to a child, especially when they feel isolated from their peers because of it. As with many things our children experience, we can teach and guide them, but sometimes they just have to touch the stove to understand it’s hot.

Tomorrow my blog will be on the situations and concerns about Kurtis’ safety with his diabetes at school.

For most diagno…

For most diagnoses all that is needed is an ounce of knowledge, an ounce of intelligence, and a pound of thoroughness. – Anonymous

In January, for the second time in two months I arrive in the Emergency Department.  

I have to be in pretty rough shape to go there.  I can count on one hand how often I have gone for myself.  Having worked in the ER, I have seen people’s definition of what an emergency is.   I don’t want to be one of those people.  But, here I am doubled over in pain again.  Just before heading out the door, I stand with my hands shaking, heart pounding, crying…Googling my symptoms one more time, trying to find a diagnosis that I can fix so I don’t have to go.  Then I think to myself…what if I am dying of something and they can treat it?  That would be really stupid!

So off I go.  The Triage Nurse asks what’s happening.  I tell her.  She takes my history.  Takes my blood pressure.  WHOA!!  I guess I am in pain….155/100.  Ok, I feel a little more justified in being there.  They take me right in.  Ok, I’m feeling even more justified.  

The ER Doctor comes into assess me and has already looked up my health history from the past 10 years! That’s a first!!  I describe to him what I have and am presently experiencing.  I tell him my thoughts about it.  I tell him the tests I have had.  He urgently orders a shot of pain medication in my hip.  The nurse comes in and tells me that it will sting a bit as it is going in.  As she injects it, I comment to her that it doesn’t really hurt.  THEN, she pulls the needle out and man, oh, man…talk about a delayed reaction!!  The burn!  But, if it was going to take the pain away, the burn was the least of my discomfort.

The thorough assessment by the Doc gave me some reassurance that this time there would be a diagnosis.  Although I had an Ultrasound and a CT Scan from my earlier ER visit, which showed nothing, the Dr insists I should have another CT Scan.  In my mind, I am thinking MRI! MRI!  But I figure I will humour him.  

Finally the pain med begins to take the edge off.  During the Ultrasound, the Tech is taking the probe across one spot in particular, over and over.  Let me tell you, that was fun…NOT!  A necessary evil.  Finally, she asks if I have a had a different type of Ultrasound.  I have not and feel a sense of relief that she is deciding to do this.  Afterwards, she informs me the ER Dr will talk with us about the results when we go back to Emerg.  She sends us on our way.

Back in the ER, it takes the Dr a bit of time before he comes to speak with us.  I am terrified. Is it, he still doesn’t know or something very serious?

He tells us he has spoken with a Specialist and tells me I have a condition called Adenomyosis.  OK!  I have an answer.  I have a condition.  BUT, what is it, I ask.  He says he doesn’t know, he has never heard of it.  Huh?!?  So is it treatable?  Is it something I have to live with the rest of my life, because pain and diabetes management don’t go well together.  Is it terminal?  He tells us the Specialist wants to see me in a week to discuss treatment options.  In the meantime, he sends me home on Tylenol #3’s and prescription NSAID’s.

I whip out my phone and go to Google.  I guess the Dr doesn’t have Google or a Medical Dictionary at the hospital (insert sarcasm).

After reading about it, a wave of relief washes over me.  I know what the discussion will be with the Specialist now!  It is treatable.  I will need major surgery.  I am excited.  Really, I am!

After researching more, I realize the many issues I am having with my body the past many years, I now know are directly linked to this one condition.  The surgery will fix these things!  

In less then a month I am looking forward to beginning the recovery process.  In the meantime, I have focused on eating well, taking my vitamins and supplements, keeping my blood sugars tight, getting enough sleep and walking.  Ideally, I would like to exercise more intensely to strengthen my muscles but I am not well enough for that.  I remind myself in a few months I will be able to.   I have been reassured by a few friends who have had the surgery that I will wake up one day on week six of the recovery and realize how great I feel, how rough I’ve felt these years.  The countdown is on.

I am looking forward to my new life.