I’m OKAY!! Really!?

With the exception of the time we dated in high school, my husband Steve is diagnosed with Type 1 spousal diabetes for just under four years.

It may seem silly but I assumed in all this time he knew diabetes like I did.  I can’t even tell you why I thought he would learn 39 years of living with Type 1 diabetes as I have experienced by observing signs, symptoms and random sharing of how I feel in certain situations.  He has never had formal education in the less than 4 years we have been together.

The moment I understood I need to share my life with diabetes more?

We arrived in Lima, Peru.

After settling on the last leg of our journey we decide to head out in search of a few markets and sites for some art pieces.

On the way back, my pump alarms that my sensor is telling me my blood sugars is 4 mmol/L.  My sugar is going down.  Stupidly, I have no sugar on me…Steve is so good he usually does have lifesavers in his pocket…but he has none.

I feel it is lower than 4 mmol/L.  But I am stubborn.  Steve asks if I want him to go into a store and get sugar.  I say it’s OK .

First, when my sugar trends towards low but I feel like I am not in danger, I don’t treat with rapid acting sugar, I set a temporary basal rate.  I think it’s a control thing.  I want to change the stupid system that really works…just to see if I can make it better.  I am so anti-sugar….I really want to take it…mental block.

So…I say to Steve, it’s okay, I’ll set a temp rate.

And we keep walking.

And several minutes later I become dull.  And quiet.  I lack my bubbly, sunshine Type A personality.

Steve knows but doesn’t know.  He hasn’t experienced such an extreme moment like this.

I personify strength.  Knowledge.  Power.  Ability.  I am never the victim.  He trusts that. Even thought his gut tells him different.

So he trusts me and my choice.

Until I mumble I want ice cream.  And he asks further questions.  And I am indecisive and vague.

We end up in a grocery store a few blocks away from our hotel.  He asks me several times what I want to get….I don’t know.  In my mind I want to ask him to help me.  Save me from this terrible prison in my mind of wanting to be in control.  Not to ask for help.  I will take care of myself.  I won’t confess I have failed.  I won’t ask.  I refuse.  I won’t.  I have done this since I was a little girl.  My (mis)behaviour trumps my voice.

I am no good to anyone.  I know it.  I am too far gone to say that.

Steve finally suggests and I agree.

We pay out at the cash and I inhale.

Many minutes later Tracy returns.

Later that night we debrief.  He tells me…”I knew, but I didn’t because you know!”, but I did.  And I failed to tell him.  Thankfully he saw it today. Exactly what I just described.

He tells me “…from now when when you say “It’s okay, I’ll set a temporary basal rate.”  I am going to pop into a store and buy some candies.”

And he will tell me.  “You need this candies”.  And I now I will take them.  Regardless of how bad I want to be in control.  Because, we have this consensual contract.

It’s good to share my diabetes.  A liberation.  Enlightening.  It is a relief to give a very small piece of it to someone else.  Even though it is only a very small piece of what my mind thinks of 24-7-365, if feels good. Despite how much control I want.  And how hard it is to let go.

Make the Call

This is the first thing I saw as I opened my eyes on June 18, 1996, the 5th Birthday of my daughter Cayla. A toilet.

As I open my eyes and look around I realize I am sitting on the floor of the bathroom. I am freezing cold. I am covered in something sticky. It is in my hair, on my face. It is all over me. My lips are numb. My left thigh aches.  I note I have on the same clothes I wore to bed.  An oversized t-shirt with the decals that celebrated the Toronto Blue Jays World Series wins in 1992 and 1993.  The t-shirt is so soaked in cold sweat it could’ve been wrung out. I am shaking profusely.

I then look over to my left and see my then husband. He is sitting on the edge of the tub. I mumble to him “I’m low.”. I see that he is holding my glucose meter.  As he shows me the face of it, evident he has just tested my sugar I notice his hand is shaking. He says “No, you’re high.” and shows me the number on the meter. I feebly argue I am definitely low despite the number on the blood glucose meter. I then say my leg is sore and ask if he gave me a needle.

He then explains to me the events that occurred that lead to this point.   As he is sound asleep in bed he feels my arm fall across his chest in bed. As he grabs my arm to remove it from his chest, he realizes that it is very cold and clammy. So cold and clammy he wonders if I am alive. After placing my arm back at my side, he nudges me and ask if I am okay. According to him the only sound out of my mouth is a moan. He continues to tell me that he then picks me up out of the bed and carries me to the kitchen where he attempts to feed me honey, as he tries to tuck the honey into the corner of my cheek to allow it slowly drain into the back of my throat, down into my stomach where it will begin to raise my sugar, I fight.

According to those who have cared for me during a severe low, I am not a nice person.  Despite my small stature I am a fighter & don’t like to cooperate.  I have been known to be holding my son Kurtis when he was a baby, refusing to give him up, insisting I need to protect him.  When I injected my insulin using vial and syringe I made a habit of leaving a new syringe and vials of insulin on the kitchen table so I didn’t forget to take my insulin.  After being carried from the bedroom, unresponsive and seated at the kitchen table, while my caregiver gets the honey out of the cupboard, I have been known to unconsciously draw up my insulin from the vials into a syringe & insist I MUST give me my insulin.  With adrenalin kicking my mind into fight mode, I have been known to hold the syringe full of insulin tightly in the air, making it challenging for the person trying to save me from my low to get close enough to treat it.  I have been known to place both feet on either side of the outside of car door to prevent my caregiver from getting me in the car to take me to the hospital.  Yes, I am one of THOSE in a severe low.

He continues to attempt to place the honey in my mouth.   According to the story I hear the # on the BG meter reads high, well above target.  As a result he re-adjusts his plan and determines that when he found me in bed I was not low but high. He injects 10 units of Humulin® R (regular) insulin in my left thigh. I don’t remember any of it.  It is 5am when he found me cold and clammy in bed, it is 10am when I wake up to see the toilet.

After I come to my senses in front of the toilet, he helps me clean up and leads me to the couch. I feel so guilty. Not because I had the low…it was considered inevitable with that type of insulin and I always tried to convince myself it wasn’t my fault. Back then the insulin I took caused me many severe lows.

I feel guilty because it is Cayla’s 5th birthday and birthdays are important. My Mom always made birthdays a very special day and I made a point of carrying that tradition on for my children.

I felt guilty because I am not able to get up and make Cayla’s morning as special as I typically did. I am not able to smile, hug her and wish her a Happy Birthday. I felt guilty because I can’t make her Birthday breakfast.

Instead, she is witness to her Father trying to bring her Mother out of severe low.

I feel guilty because I have to lay on the couch testing my sugars every few minutes to make sure I don’t bottom out from the 10 units of Humulin® R I have active in me.  I feel guilty because I am a bystander as I watch her Dad present her with her new bicycle. I feel guilty that on that day, her special day I feel like a failure as a person, a parent, as a person living with diabetes.

The learning I received from this morning is that she was more worried about me then how the morning of her 5th Birthday unfolded. She smiled as he presents her with her new bike. Then she says to her Dad, ” Daddy, I think you should’ve called for an ambulance.”

“God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference….” –Reinhold Niebuhr

Meaning

If you didn’t live with diabetes would you be the same person you are today? What has changed about you & your family as a result? Has it been a positive change?

Without a doubt I have a passion & a purpose that I believe would have been more difficult to discover had it not been for living with ‘my’ diabetes. Although there are days I wonder how much more energy (many without diabetes say I have more then they could harness so I hesitate to wish that upon anybody! LOL) as well as how much easier & clearer my mind would be to think & process daily thoughts (that again scares people that if I thought & processed more than I do I would be a very overbearing person). Maybe I am just really good at hiding how crappy I feel somedays. BUT, in the end, I have no regrets or misgivings about being handed this lot in life. Especially now that I sit with peeps & their families that live with diabetes & appreciate that I am their coach. I love sharing my experiences of 38 years of living with diabetes, as well as 13 years as a Mom of a child with diabetes to help others.

On the other hand, I do find at this point in time challenging as a parent of a ‘child’/young adult living with diabetes. At time of diagnosis & since he became a teenager I wish it had never happened or that I could keep him at the age I was able to manage him fairly easily. I tell myself that someday I will not feel that way. He too will find his rhythm, as I did, living with T1 diabetes. I don’t think there is a parent out there that can say that their family, them or their child is better off because of having diabetes.

My Mom’s perspective? Now that she knows I take great care of my diabetes & have a career that I love as a result of it she doesn’t worry as she did years ago. With that being said, I know she still has this ‘old’ diabetes mindset that one day I will announce I have kidney failure or I’m going blind. But as each day goes by I know she sees this will not happen…not in this day in age.

An Unexpected Anniversary

October 30, 2000 I am in the kitchen baking up Halloween treats for the kids Halloween parties at school. I loved these moments. The excitement, the energy, the creativity. Halloween was so much fun.

But…that day transitioned into a life I never thought I would ever entertain on October 31, 2000. That was the day I learned I would become the parent of a child with Type 1 diabetes.

On the morning of October 31st I got the kids ready for school. I packed the plastic containers with Halloween baked goods & saw them on the bus.

That afternoon as the kids unloaded off the bus & I walked them in the door asking how their day went & how their Halloween parties went, Kurtis say’s the words a parent does not want to hear.

“I didn’t eat any treats today because I felt sick to my tummy & drank & peed all day.”

I felt the energy drain out of my body. I didn’t even have to test him. I knew.

I asked Kurtis if Mommy could poke his finger like Mommy does to test her sugar. He flat out refused. I was on my own so did not have the help of another adult to convince him otherwise. Luckily I happen to still have Keto-Diastix in the bathroom. After I dipped & confirmed what I already knew with 4+ sugar & negative ketones, I placed the call to my GP’s office. He reassured me that based on the fact he had no ketones, take him out for Halloween as usual but don’t allow him to eat any treats loaded with sugar & bring him in first thing in the morning. At that point we would begin the transition to insulin with education to be a parent of a child with Type 1 & subsequently living with it.

Initially, the next 2 nights were the hardest. Halloween involved me trying to portray it was a normal night out with the kids trick or treating. With the exception that my 7 year old baby had just learned he had diabetes like his Mom. He would have to take needles & poke his fingers & have low blood sugars that didn’t look nice. As we walked up the road, from house to house, Kurtis would throw himself on the side of the road belly first & wail “I don’t want diabetes” or “I hate diabetes.”. I would leave him briefly then say as I tried not to cry “Okay Buddy, l know it sucks. Let’s go to the next house & trick or treat.” I honestly didn’t know how else to be. I knew he had to grieve even though it was about something he didn’t quite understand in it’s entirety but knew starting tomorrow he would begin to learn the essence of what living with diabetes was about. He only understood the external ‘bad’ things with diabetes….severe lows, needles & finger pokes. He didn’t yet understand the other side….how he’d feel being low, high, going to the Dr’s the next day to have blood drawn or the complexity of counting carbs, the demand it would have on his body & mind 24-7-365 & the ridicule he would receive at school for years to come.

The next day was emotionally distressing for both of us. I was the only parent present. His father refused to come home from out of town to support this critical event or his family.

While Cayla went to school, Kurtis & I made our way to the GP’s office. After a lot of coercion we finally tested Kurtis’ sugar by finger poke to determine his fasting sugar was 13.5 mmol/L. I blamed myself. I felt guilty. What have I done to my child?

The GP called the Paediatrician’s office & the hospital to arrange an appointment at the Adult Diabetes Clinic as there was no Paediatric clinic at that time.

We knew the Paediatrician from 6 years prior when Kurtis had an anaphylactic reaction to Benadryl & severely ill with chicken pox in which he almost died at the age of 1. We chatted briefly & said to me…”Mom, you have Type 1 & you’re a nurse, you know what to do. I’d rather not put him in the hospital so here’s the prescription for the insulin.” He gave me the dose to give him & sent me off to the hospital to learn how to carb count.

Once at the hospital I sat with the dietician as she taught me how to carb count. The entire visit Kurtis had marker in hand. Standing in front of a flip chart he wrote time & time again in big 7 year old letters “I HATE DIABETES” “I HATE DIABETES” “I HATE DIABETES”. It hurt so much to watch but I knew it was good for him to get it out. Me? I was on robot mode. Survival. Take it in. Learn it. Function. Sacrifice emotion for taking good care of my baby. Helping him through this time so that he accepted & transitioned into such a terrible diagnosis.

Once home, I explained to Cayla what had happened during that day. She was 9 & a mature 9. She grasped it fairly easily & knew she had to step back & let me care for Kurtis for a little while. Closing into supper time I explained to Kurtis that just like Mommy he will test his blood & take a needle. That’s where it didn’t go so well. Testing his sugar was a bit of challenge but doable. He tested at 32 mmol/L. I explained to him that he really needed his insulin to bring his sugar down as I didn’t want to have to take him to the hospital & have someone else do it. He didn’t care. He just didn’t want the needle.

After about an hour of trying to convince him, going into another room & having a little cry on my own, I called my Mom. Knowing she had been through worse then me with my diagnosis, I asked for her help. When Mom arrived my head was spinning, Kurtis was crying & Cayla was trying to keep the calm in a whirlwind of frenzy. I was also angry because his father wasn’t present in a time we all needed him.

In my mind I can still see Kurtis sitting on the kitchen chair on an angle from the table explaining to me in tears how he doesn’t want the needle & his rationale as to why he doesn’t need it. His eyes swollen with tears pleaded to me & it broke my heart. Thankfully my Mom had already been through the heartache of my diagnosis at age 5. She had raised a child with Type 1.

In her calm, she finally convinced Kurtis to let me inject in his arm.

After I got the kids settled to bed, I cried & cried. I felt it was my fault. I caused this.

How did I move forward? My Mom asked me a question that changed my attitude which helped me transition to a Mom accepting she has a child with Type 1 diabetes. “Would you have had him if you knew he would get Type 1?”

No regrets. It sucks but attitude & the choice to transition to a new life is essential to living life with Diabetes Beyond Borders. This year is another Diabeteversary. October 31, 2013 Kurtis has lived with Type 1 for 13 years. The transition continues.

Trick or Treat

October 31st is a significant day for me. I have 3 major memories that I associate with this day.

1. Going out for Hallowe’en as a child living with Type 1 diabetes.

2. October 31, 2000 is the day I dipped my 7 year old son Kurtis’ urine to discover he had 4+ sugar and thankfully no ketones but knew he had developed Type 1 diabetes. I dipped his urine as he refused to let me test his sugar with a glucose meter. I had poked his fingers 2 years earlier and knew this day would come.

3. I became a parent of a child with Type 1 diabetes trying to figure out how to let him enjoy going out for Hallowe’en without allowing his blood sugars to go askew.

This Blog is 1 of 3 parts sharing my experiences with October 31st.

Part 1:

When I was a child there were no pumps, rapid acting insulin or carb counting. My Mom did not have the technology at her finger tips to count carbs, push a button &/or inject & eat the treats. For the first few years, my Mom & Dad would take me out for Hallowe’en. They would use the bag of treats for when I had low blood sugars. I don’t recall having them as a random treat.

I don’t recall how old I was but I was under 10 when there came a time my parents figured I would be old enough to keep the bag of Hallowe’en candy in my closet. They told me I could keep it in the closet in my bedroom on condition that I tell them when I felt “funny” so I could dip my urine…yes…dip my urine!! to test to see if I was negative (a possible low). Then I could ‘treat’ with my treats.

I recall trying to have self control but what child under 10 can keep a bag of candy in their closet & not eat it at will? I understand why my parents did what they did, they wanted to try and incorporate some normalcy for me. They felt by doing this it would help me feel included in choice.

What happened? Each day when everyone was busy I would sneak candy. How did I get caught? My Dad was an avid runner. He always chewed gum when he ran. One day he went to go out for a run and realized he was out of gum. He came to me and asked to take some gum from my Hallowe’en bag. I still remember the panic. I felt horrified. The bag was full of wrappers but nothing else.

Little did I know that my Mom had been perplexed for weeks wondering why my urine was dipping positive for high sugar. After trying to avoid my Dad from going into my closet to get my bag of stash that no longer existed I knew the jinx was up.

I stood there with a full body panic as Dad looked into my bag. Dad was pretty cool. I do believe in that moment in time he knew that him & Mom shouldn’t have allowed this to happen. It was explained to me the implications of what happened to my sugars as a result of my choices. Mom was relieved because now she knew why!! Two very important lessons I learned and interestingly will never forget.

What happened with subsequent Hallowe’ens? It was actually pretty cool! Mom, Dad & I with my little sister & brother would go through our stash as most do. When we did, Mom, Dad & I would negotiate the price of my stash. It was a game. With that money I was allowed to go shopping for my own treats. Off to the local convenience store I would with my $1-$2 and go buy whatever sugar free treats that were offered.

I don’t feel like I missed out. Not once.

Stay tuned for Part 2.

Change or Transition?

The words spill across the physicians desk or the hospital bed “You have diabetes.” or harder yet “Your child has diabetes.” Your head spins trying to absorb what that means. Depending on what your knowledge or experiences are, thoughts, emotions and response after this moment can vary dramatically. What you do know is that from that moment on your life has changed forever. Forever. Changed. Where do you go from here?

At this point I challenge you to substitute the word change for transition. Change is defined as an act or process through which something becomes different. Yes, this is true when receiving the diagnosis of diabetes. Something has become different. Transition is defined as the process or a period of changing from one state or condition to another. Do you see the difference between change and transition?

The picture you see is of the Peterborough Liftlock. It was recently taken on a beautiful Fall day on one of our weekend walks. Wikipedia provides a great summary of the greatness of this world renown landmark.

“The Peterborough Lift Lock is a boat lift located on the Trent Canal in the city of Peterborough, Ontario, Canada, and is Lock 21 on the Trent-Severn Waterway.
The dual lifts are the highest hydraulic boat lifts in the world, with a lift of 19.8 m (65 ft). This was a considerable accomplishment at the time when conventional locks usually only had a 2 m (7 ft) rise. It is not the highest boat lift of any type in the world today: the lift at Strépy-Thieu in Belgium has a greater capacity (1,350 tonnes) and height difference (73.15 m)…Many local residents of Peterborough skate on the canal below the lift lock in the winter.
The Peterborough Lift Lock was designated a National Historic Site of Canada in 1979,[1][2] and was named an Historic Mechanical Engineering Landmark by the American Society of Mechanical Engineers in 1987.[3]”

Picture yourself sitting in a boat on the canal at the top of this lock. You will have to trust me at this point but the view from the top is amazing. Add the transition of colour on the leaves on the trees. It is breathtaking. I say the leaves are transitioning because we know that eventually those leaves will fall off and the tree will become bare. The tree is on a journey with an evolving objective. At this point it’s goal is to shed its existing facade so it can rest for the winter to produce buds and beautiful bright green leaves in the Spring.

Back to the locks…It is understood when you approach the lock that eventually you will transition to the water below and your journey will continue on. Whether you have a plan as to where you to go from that point can amplify the quality of the experience when you arrive at the bottom of the lock. Most would agree that a plan needs to be made in order for the next phase of the journey to be enjoyable and memorable. Without a plan to transition to the next location, all could be lost stressing out on what to do next rather then taking pleasure in the journey.

To be successful living with diabetes one must not be satisfied with just accepting change but beginning the transition to living a life in a different state. There are many steps to achieving this, a plan is essential. If these steps are taken and transition is accepted, not just the understanding and acceptance of change, you can live a full and productive life with diabetes. I encourage you to always plan and be secure in your journey knowing you are transitioning to the next destination in your life with diabetes.

Once a Mom Always a Mom

What drives a Mom of a teen & young adult crazy? That our child living with Type 1 thinks they are invincible. With or without Type 1 most teens & young adults do. My biggest worry as a Mom of a 20-year-old son living with Type 1, who is very, very active working as an apprentice in the construction industry with his Step Dad & driving on his own, is being low on the job site or while driving. He usually remembers his insulin pen but sometimes forgets pen tips.

Pictured is what I pack for him to help him keep with managing his diabetes daily as well as ease some of my worry. One kit is for his car, one kit is for working on the job site. He is on multiple daily injections so after treating a low blood sugar with juice & reaching a blood sugar of 4.0 mmol/L he needs a carb/protein snack to prevent him from going low again.

I bought a 6 quart/5.83L Rubbermaid plastic container with lid for $2.00. I can fit 10 Minute Maid orange juice boxes which contain 23 grams of carbs, 6 Nature Valley chewy protein bars which has 17 grams of carbs,11 grams of protein & 1 box of 100 NovoFine 6mm pen tips. The only items I am missing are a Frio® pack http://www.readycareco.com/splashpage_frio.htm & 1 Novolin Pen Echo®.

We never stop being Mom’s or Dad’s but we assume once they enter into their 20’s they have enough figured out to survive & thrive BUT they don’t. They aren’t going to tell you that. Our job parenting a Type 1 teen & young adult is to slowly let them go while gently supporting them when they need it. This kit is one way I can support my son Kurtis without looking like I’m in his face about his diabetes. He will never tell me this but I believe it gives him a sense of security knowing he has the kit when he needs it & that he is supported by his Mom & Step Dad.

How Green is the Grass?

This pic is where the movie Laura Croft Tomb Raider was taped. We were there when we visited Ta Prohm at Ankor Wat in Cambodia. I’m a big Tomb Raider fan. it was pretty amazing to be where it was filmed. The tree you see in the pic was jaw dropping. It was also amazing to think that something with such grandiose roots, reaching for the sky could survive in such barren conditions. It seemed it was in a totally foreign environment in which it needed to survive, yet it thrived & boasted so with its huge roots.

Thinking about that tree I reflect back in time. I remember being a “Diabetes Consultant” i.e. a sales rep for Novo Nordisk Inc. I fought hard to get that position. I knew I was fortunate to be there. I also was confident I had the passion to move it forward & benefit others, namely Health Care Practitioners. My goal was to influence so they would improve the lives of those living with diabetes en masse. I wanted to change the world of diabetes. I had been on the other side working in I.C.U. & I wanted to stop the madness. I believed that the best way to make that impact was in this way. Because I believed so passionately & so deeply about ‘my’ cause I passionately believed Novo Nordisk’s products were the best out there. No other pharmaceutical company selling insulin, pen tips, insulin pens or Type 2 oral agents could have a product as good as the one I sold. Their pipeline & success was overwhelming. Based on my steadfast belief & guidance from those who taught me to sell, I learned to sell & I sold well.

Did I sell like a pharma rep? I have & will maintain I didn’t. I had a hard time asking for the business, closing the sale. Instead, I believed through building relationships, earning trust & education inadvertently I did sell. When I left the company I was vying for 1st place out of 65 reps in less than 5 years. When I began the territory I looked after was flat lined, when I left it was growing in double digits. I steadily climbed the ladder of sales success. My drive wasn’t because of the money or recognition. Why did I ‘want it all’? Because I wanted to tell others that I succeeded based on building trust, relationships AND most importantly educating my clients with passion because I believed. I believed in the best for people living with diabetes & I wasn’t afraid to say so. My clients reassured me voluntarily they heard me loud & clear & I lead them to believe. They wrote the products I sold because they trusted that I would provide for them what was needed to take care of their patients living with diabetes. I would give them the information they needed to help them empower their patients.

Little did I know I was establishing my diabetes roots & standing out in an environment that is tough to penetrate. I was often asked why I wasn’t a diabetes educator. I just couldn’t envision myself doing it. I liked the rush of sales & the impact I made. I loved the relationships I had. I could walk into clinics & see Docs that other reps couldn’t. I didn’t think there was anywhere else I could make such a huge impact.

After my tenure with Medtronic, I honestly didn’t know where I belonged & believed exiting the diabetes world may be best for me to take care of myself & my family. What I learned was, when the roots are deep, it’s really, really hard to transplant somewhere else.

Seven weeks today I have been a Diabetes Nurse Educator at the most amazing clinic for Type 1’s. I don’t know of any other like this. As I said, first, I didn’t think I’d ever be an ‘educator’, which now I see I always was. Secondly but most importantly & the reason for this Blog is the deep roots I have established with the relationships & trust I developed over the past 9 years. All of these things have brought me to where I needed to be. Many I work with were my pharma clients, now they are my colleagues.

The greatest thing I have learned in the last 7 weeks? For all the products; insulin, meters, insulin pens, pen tips & pumps….my passion for certain products has dissipated a lot. I have realized & I have preached it…each persons diabetes is unique. It is their own. The product needs to chosen for the lifestyle of the person living with diabetes…not the other way around. I sit at my desk listening to my patients & I ask…what tools & education can I share with you to empower you to live with your Diabetes Beyond Borders?

The roots just keep getting deeper.

The Stealth Fighter of Diabetes

I liken a Stealth Fighter to an undetected low blood sugar. Until I started back on my Continuous Glucose Meter a few weeks ago I thought I was overwhelming tired at times because there was too much going on.

Until I experienced a few incidents…one thankfully I detected & treated by finger poke thanks to the prompting of my fiancé & subsequently, the next detected by CGM.

The first happened shortly after I woke up. Our routine involves enjoying coffee & tea while catching up on local & international events & updates. I became extremely tired soon after reading updates on my computer. By the time I was in the kitchen making eggs, my heart was beating fast & I began to have a hard time breathing…not symptoms I usually have with a low blood sugar. In my mind I reviewed the things that may be overwhelming me. I am forever making a list in my head of the days & weeks ahead. I thought maybe I was getting ahead of myself too much, putting myself in a bit of a frenzy. I realized it wasn’t that, BUT I just couldn’t put a finger on the pulse. As we sat down to breakfast & I began to eat the poached eggs the racing heart & difficulty breathing continued. As I ate my poached eggs, I realized I was having a hard time eating. I felt nauseated…almost like a brick was in my stomach. I began to tap my foot in an attempt to focus on what the issue was. Within a few seconds of tapping my foot my fiancé Steve asked me what was wrong. By this time I had tears in my eyes & a lump in my throat. In my mind I was thinking “What the heck is wrong with me!!”. I said to him, “I don’t know.” He summated what could be causing it. Then he asked if I had checked my sugar. I agreed that was a good idea. I was 3.2 mmol/L!! It didn’t feel like a low I would usually have! Once treated, these crazy, weird symptoms disappeared.

Shorty after, I decided it was in my best interest to start wearing a Continuous Glucose Sensor again. I have to be honest, when I have a sensor in I love it. It truly is the ultimate advancement in technology that I never thought could exist given what I have experienced in 38 years living with Type 1 BUT I have a huge block with taking the time to prepare, insert and calibrate. It’s not that much more work than I do with wearing a pump, but I guess it’s just that one more step or three that I just don’t want to do. The motivation to take those extra steps becomes exponential when experiencing a stealth fighting low like described above.

The second undetected one I had was shortly after I had the first sensor in. It was shortly after breakfast (do you see the morning BG’s as being my source of trouble!). Again, I became tired. Not the same tired I get with other lows…I didn’t think so. I went upstairs to have a shower. I checked the CGM graph to see what my BG was at. It was 5.4 mmol/L. Good! I have my cell in the bathroom for those ‘just in case’ moments. I never stop being a Mom even though the kids are in their 20’s. Although none of them were from my kids I hear my phone ring, text tone and email going off. I border on irritation as I promise myself that for the few minutes I’m in the shower the world & my kids will survive without me having access to my cell, thus me having a peaceful moment in the shower. Still feeling not quite right & overtly irritated given how good natured I usually am, I am not able to put a finger on it. My pump begins to go off. It is alarming like crazy. By this point, I realize I’m quite low. I finish as quickly as I can & get to my pump. As seen in the pic above I am 2.4 mmol/L & still going down!! I put in a temp basal of 0%, put some clothes on & head downstairs to get some fast acting sugar. It took an hour to have the residual symptoms subside. Boy was I ever tired!! It scared me.

It occurred to me that I had been having these incidences many times a week for quite sometime. The reason why I didn’t pick up on the lows by finger poke? Each time I tested when I felt tired except for that day at breakfast, the lowest I tested on my meter was 4.1 mmol/L. Even that morning after my shower my meter only tested to 4.0 mmol/L. Which do I trust? Based on how I felt & the technology I decided that these lows were truly stealth-like. Based on the fact that glucose meters can ‘ideally’ have a variability of 20% in tests, I decided it was time to take action.

It has taken a lot of work in the past 3 weeks to nail it all down, but changes have been made & I notice a huge difference. Be ware of the Stealth Fighter of Diabetes…it is alive, well & undetectable.

 

To Pump or Not To Pump

I have some great questions about Insulin Pumps today.

At this point, I will now take a moment and apologize because I have pumped for 12 years & have the benefits of being covered for insulin pump therapy throughout this time, I assume everyone knows what I know about them. I also assume, if they have the ability to, they would automatically want to be on one. That is very ignorant of me and I’m sorry. I started Diabetes Beyond Borders for this very reason, to educate and give as much information to empower you. Unfortunately I missed the mark on this one.

One more small disclaimer. I worked as a Territory Manager for Medtronic Inc. selling Paradigm Insulin Pumps. This Blog will not sell one pump over another. At this point I am now doing Insulin Pump starts & follow-up for Medtronic and Accu-Chek. As a Health Care Professional, peep living with Type 1 & Mom of a Type 1, my aim now is to give you an unbiased summary about Insulin Pump Therapy so that you can research more to see if pumping is right for you & which one best suits your lifestyle & needs if you decide to.

So…here we go….

SIZE: In general, all pumps are bigger then a pager but smaller than a cell phone. Many people have mistaken mine for a pager or cell. In the picture in my hand is one of the smaller ones. I don’t need a lot of insulin, so I use a smaller pump.

COLOURS: You want colour it, you got it. There is charcoal, clear (like mine), pink, green, purple… You can buy covers & skins to decorate it anyway you see fit. I like the clear one because I wear mine in my bra a lot…I don’t want it to be seen through my shirt. A lot of guys like charcoal because it looks more like a pager.

PARTS OF THE PUMP 101:

1. BUTTONS: Used to navigate the pump.  About 5 buttons on the face/front of it, some pumps have ~1 or 2 on the side as well.

2. REMOTE:  Some pumps have remotes that work also as the glucose meter. Not all have this.

3. CARTRIDGE: Fits in the pump which has Rapid Acting insulin such as NovoRapid, NovoLog, Humalog, Apidra (when on a pump you no longer take Long Acting insulin such as NPH, Levemir or Lantus). The cartridge is plastic.

4. TUBING:  It is attached to the cartridge of insulin which comes in various lengths, as short as 18″ to as long as 43″ & a few lengths in between. The tubing is flexible & durable. There is a new ‘patch’ pump on the market that does not have tubing.

5. INFUSION SET: This is the teflon tube or needle that sits under your skin to deliver the Rapid Acting insulin. The tubing connects to the infusion set. It can be connected & disconnected as needed for showering, activity,or intimate moments. There are a variety of infusion sets to choose so that you have the right one for your lifestyle.

BASIC FUNCTIONS OF THE PUMP:

1. BASAL RATE: I call this the ‘base’ or ‘fasting’ delivery of insulin that your pancreas would be doing for you if you didn’t have diabetes. The Long Acting insulin you are taking tries to do this through 1 or 2 injections per day. On the pump, you can customize your basal rate to meet the different needs your body has throughout the day. You can make these changes on an hourly basis if needed. Most people only need 3 − 5 different basal rates during a 24 hour period. They do not change often after they have been established. BUT, the beauty is, you can change them and the time of day you need to. Basal rates are delivered in very small increments throughout the day, each pump delivers the rate based on its own calculation in which that company feels is best for their product but at the end of the day, the delivery is balanced & tiny enough it provides better balance when you are not eating. It is easier to skip a meal or get off schedule without suffering the consequences of a low blood sugar because of the features of a basal rate.

2. BOLUS: Essentially it is the Rapid Acting insulin you inject with. The beauty? The tube is already under your skin so you don’t have to inject. The other benefit is the pump does all the work to calculate your insulin dose. The increments that can be delivered on a pump can be as small as 0.025 units and as big as 35 units. I imagine now your routine on injections involves adding up your carbs, trying to decide how much extra to adjust for a high or low BG, taking a calculator or phone & crunching the numbers to find how much you will inject with your pen or syringe, which usually has to be rounded up or down to the nearest half or full unit of insulin. The built-in bolus calculator allows you to input your BG (usually remotely through the glucose meter), input your carbohydrates. The pump then shows you the breakdown of why it has decided you need a certain amount of insulin. It considers a correction for your sugar to bring it to target, whether that means adding extra to treat a high or subtracting some off to avoid a low. It also shows the carbs you chose & how much insulin you will get based on that. It also takes into consideration how much insulin you still have in your body. Having bad lows from unaccounted insulin still floating around in your body will be no more. The pump remembers.

3. BG READINGS: The pump stores your readings if you enter them into it, whether manually or through your remote meter.

4. CARBS: The pump keeps a history of the carbs you have eaten, when & how much insulin.

5. INCREMENTS: The increments on the basal rate & bolus can be as small or as large as needed. Some pumps vary, so make sure the one you choose fits your needs. Type 1 & Type 2 peeps do very well on pumps for this reason.

6. DELIVERY: The rate a pump delivers insulin varies from pump to pump. Be aware how comfortable you are with the rate it infuses into you.

7. SENSOR: There are only 2 companies that I am aware that offer Continuous Glucose Sensor technology; Medtronic & DexCom. I will post another Blog about this technology. It is far too complex to include it in this one. Suffice to say, having used the technology personally, I see the impact it has on diabetes management & glycemic control.

RESPONSIBILITIES AS A PUMPER:

1. BG TESTING: At least 4 times per day and more often as necessary.

2. INFUSION SET/CARTRIDGE CHANGE: Infusion sets need to be changed every 2 − 3 days, depending on the set you choose. Some companies are saying to change the cartridge & tubing every 3 days, others support 6 is the way to go.

3. DIABETES KETO-ACIDOSIS PROTOCOL: With only having Rapid Acting insulin in your body, it is only in a matter of hours that you will ‘run out’ of insulin in your body if something doesn’t work with your pump. It is easy to trouble shoot & correction can be quick. The trick is to be acutely aware when you test high & adhere strictly to protocol to treat the high sugar. It is rare it can happen but when it does it is SO important to follow the few simple steps it takes to correct it.

WHERE TO WEAR THE PUMP

There is an assortment of clips, pouches & belts that are available from pump companies & online stores. This allows you to decide whether you want it under your pants on your calf, under your skirt around your thigh, clipped on your belt or around your waist, in your bra, around your arm. Creativity, convenience & comfort are key. I know many with  careers from police officers, construction workers, nurses, teachers etc that find living with their insulin pump provides better quality of life for them. It is trial and error of where to place it at first, but once you get your groove, it’s a no-brainer. You’ll forget it’s there.

PROS OF A PUMP:

1. Less low sugars
2. Less variability
3. More flexibility with lifestyle & scheduling
4. Less needles
5. Ability to pro actively prevent low & high sugars with activities, exercise, work etc.
6. Less calculating

CONS OF A PUMP:

1. Have something attached to you 24-7
2. Remembering to change the infusion site, tubing & cartridge on time. (I developed a system to help me remember, some pumps have a reminder in it)

WHAT TO CONSIDER WHEN BUYING A PUMP

1. Ease of Use
2. Technology available that suits your needs
3. Software available to download the results to manage your diabetes
4. Cartridge size (they come in 1.8 mL, 3.0 mL, 3.15 mL)
5. Insurance Coverage
6. Long term costs
7. Pump Company Customer Support
8. Ease of ordering supplies
9. Features within the pump that meet your needs
10. Basal & Bolus delivery increments that meet your insulin needs
11. Infusion set choice (one pump company’s sets are proprietary so you will need to order their supplies only, make sure they have what you want)
12. Some companies require you replace your battery cap & cartridge cap every 3 months. It will be at a cost to you. Make sure to ask about this.
13. Some pumps are waterproof & some are water tight. I have always put it this way…I wouldn’t swim with my cell so why would I swim with my $7,000 pump. Especially in a lake…if it goes to the bottom of the lake there is no getting it back.

I liken deciding to pump & choosing one to buying a car. It’s a long-term, expensive decision you will live with for 4 − 5 years. Shop wisely & make sure to ask a lot of questions. If you have the option to trial one using saline in the cartridge before buying, I urge you to do it.

Always keep in mind:

1. All companies give a 4 year warranty.
2. You have 90 days after you order your pump to return it. If you decide it’s not the right one & you want a different one OR if pumping just isn’t for you. There is no cost to you to return it.
3. Please, please make sure to add your pump to your house insurance policy. If your pump is stolen (which I know people it has happened to!), you want the reassurance you can get it replaced.

You can email me at tracy@diabetesbeyondborders.com with any questions. I am here for you.