Reassurances

I am dedicating this to my friend Dee who has concerns that she will develop the mindset of an ‘old Diabetic’.  This mindset consists of being scared to death that having short-term high blood sugars will cause amputation, heart disease, kidney disease and stroke.

As a result of these fears, in the past many ‘old Diabetics’ learned to avoid high blood sugars, purposely running very tight sugars on old insulin such as Lente®, Humulin® L, NPH, Humulin® N, Toronto® and Humulin® R.  As a result the experiences of multiple moderate to severe low blood sugars occurred daily and weekly.  ‘Old Diabetics’ were not taught the mindset that a severe low could kill them or cause damage as well.  I know this all to well because I am one of ‘those’ ‘old Diabetics’.  Sadly, today many still live life like this despite the new technologies and choices we have to manage our diabetes.

I am not supporting anything more than the targets set for you or the A1C you need to achieve to attain a healthy life, but I do believe achieving these go beyond numbers and are associated with the mindset of getting there.

Whether you are an ‘old Diabetic’ or not, being diagnosed and living with diabetes can be empowering AND daunting.  You change your lifestyle to live healthier, a big bonus!  After feeling good about your accomplishments you suddenly experience a setback.  So frustrating!

Do you recall this picture?  Do you see an old hag or a young woman?  Can you change your perception of what you initially see?  It is so hard!

Old hag or young woman

 

It is the same with our diabetes.  What do we see when we look at our lives with diabetes?  How do we change our perception?

Reassurances

Is this picture of a lane a challenge that may be snowy and slippery leading to the unknown, possibly a struggle to walk back up, heart beating fast, muscles burning?  Oh the worry over what could be a beautiful journey if the perception is changed.  Or do you see the pleasure of an enjoyable walk with relaxing views including a beautiful winter blue sky in the horizon?  Do you see it?

How can I reassure you that you can manage your diabetes and avoid the things you fear?  Honestly, I can’t.

What I can reassure you is; YOU are not bad.  You are you as a person first who lives with a chronic disease called diabetes.  Don’t connect the two as to who you are and your accomplishments as a person.

You are not your sugars.  You are not your diabetes.  When I hear the statement “I’ve been bad.”, the next words out of my mouth are; “Hey, do you have diabetes???”.  We both laugh and I say, “That’s why you have high and low blood sugars!, HEY, You have diabetes!!”

So how can I reassure you?  I have changed my view of being an ‘old Diabetic’.

I see the picture differently now.  Do you know why?  Living with diabetes isn’t just about me.  What I understand now is that if I choose to not ‘play the game’.  If I choose to not adhere to the rules, if I choose to keep my perspective as an ‘old Diabetic’ and not learn a new perspective, I am not the only one I am hurting.

Who saves me or helps when I decide to run too tight and too low?  Who is SO scared that they may lose me because I was afraid of a short term high or got crazy keeping my sugars too tight?  It’s not me!

Reassurances

ReassurancesI have given my heart and soul raising my 2 beautiful children into young adulthood, I want to continue doing that.  In particular to my son Kurtis as he begins his life living with diabetes independently.

I want to live life. I want grow old with Steve and be able to fully enjoy our journey together.  I don’t him to worry about me.  He has to deal with my choices I make with my diabetes now and in the future.

 

So, with this, these are my reassurances to you:

You can live with diabetes.

You will change your perspective each day on how that will happen.

Through trial and error you will find your groove.

Do not fear the unknown.  Work with what you have today and change your game plan and perspective as need be.  BUT stick to the rules.

You are not bad no matter what the numbers say, the only change you need to make when you see them is to make it better, for your sake and for those you love.

Being “Normal”

Image

What does every parent want when their child lives with Type 1 diabetes & it’s any special event whether it be Christmas, Hallowe’en, Birthday Parties or Easter? To portray it’s the one of the few times of their life they can enjoy what everyone else does. Well, sort of. But that’s the best we can offer, right? Do they remember or know any different? Kurtis never told me so. I don’t remember so.

From the ages of 8-11 I don’t remember what I did with Kurtis at Hallowe’en. That was the time when he took multiple daily injections. Life was a whirl wind. I worked shift work at the hospital. My whole life evolved around my children…I worked my job, my health, my diabetes…everything around the kids. I was a single parent a lot. I didn’t have a team mate I could pass the baton to & ask to take over. My focus consisted of; were the kids fed well, did they have lunches packed for school, were they doing well in school, were Kurtis’ blood sugars okay, what did I need to do make them ok, appointments for his diabetes, making sure Cayla didn’t feel like Kurtis was the centre of our family because of his diabetes, what did the kids have for homework, hockey, figure skating, testing Kurtis’ blood sugars day & night to keep him safe, setting my alarm to check him, arranging care for the kids for the few times I wasn’t there, making sure the people caring for him understood what to do with his diabetes…you get the whirl wind?

Do I remember what I did for Hallwe’en on injections? Vaguely. I know for a fact I would have kept his candy intake balanced so that his sugars weren’t crazy for days. I vaguely remember letting him pig out the night of after he returned from collecting his stash..to an extent. Then going forward matching meals with treats to keep it balanced.

Once Kurtis was on a pump, I was not so concerned. My mindset was eat it all sooner then later so that we have 1 week of craziness then 3-4 weeks of drawing it out & really messing things up. The bonus was he could put the carbs in his pump & burn it off with activity. I was lucky because Kurtis only liked certain candies. The rest he would never touch.

Christmas stockings & Easter hunts involved a lot of non-candy things from Wal-Mart & the dollar store. I kept it the same for both. The kids never said to me “where is my candy” or “why don’t get as much candy as the other kids”. I remember as a child living with Type 1 finding a brand new pair of running shoes (which I needed!) hidden for Easter! I was SO excited because they were the cool pair I wanted! You can’t substitute candy for something so wonderful as that!

Creativity & letting normalcy rule within the boundaries of keeping your child safe, is essential to an enjoyable, stress-free Hallowe’en.

Making Diabetes Sexy

Image

Making Diabetes Sexy

Pictured is my “Keeping Diabetes Sexy” bag. If you saw it in my purse you would think it was a make-up bag. It’s pink, it’s pretty, it’s girly, it’s sexy. It has character & looks glamorous. But, that is not the sexiest part of this bag, what is? The contents contained within.

Inside is a back up infusion set, tubing, cartridge, Tegaderm, AAA battery, pen tip, lancet, 1/2 unit pen with rapid acting insulin, test strips, Dex 4 gel, SweetTarts (in it’s own sexy container), ketone meter, ketone strips, BG meter & gum. GUM?!? Yep. What’s the one thing that is so not sexy when you have a high sugar??? Bad breathe!!

So why are these items that are products to support my diabetes in a time of high or low blood sugars sexy? Let me convince you they are by telling you what is not…

1. In 1995 I worked full time at a daycare. Driving home from work I realized that I was going low. All I had with me was a really ripe banana. Cayla & Kurtis were in the car with me. I managed to eat the banana & arrived at a convenience store only to discover I had no money on me. At that time there was no debit, no cell phone. I decided I could make the 15 minute drive home to get the juice I so badly needed. I don’t remember driving home. I could’ve killed my children, someone else or left my children without their Mom.

2. Just this past November we attended a Christmas dinner. We stayed overnight. About 2am I woke feeling very, very sick to my stomach. I tossed & turned until I realized I should run to the bathroom. I didn’t make it. From that time until about 8am I continued to vomit violently. My muscles ached, I couldn’t shake it. My BG’s were between 12-15 mmol/L. I determined they were high because of the stress of vomiting. I thought for sure I had food poisoning as the salmon I ate dinner was a bit ‘funny’. I continued to correct & at one point did see my BG drop to 8 mmol/L. Finally at 8am when I was struggling to breath, my chest felt so heavy, every breathe I took burning like acid, I turned to my fiancé & asked him to take me to the hospital, something was really wrong. It was at that moment I picked up my pump to correct a high one more time & realized I could feel the wet insulin coming through the tubing at the connection of the cartridge. It was only then I realized I was in DKA. Thankfully I had an extra site change, tubing & cartridge with me. I changed it up & took a sufficient bolus to avoid hospitalization. I reversed the DKA fairly quickly on my own. I had no ketone meter & no ketone strips to test & avoid this. So not sexy…my fiancé cleaning up after me every time I threw up not knowing what else to do.

What’s else makes our diabetes look unattractive?

1. Having a low & asking someone for something… anything… because we didn’t have our sexy bag.

2. Running out of test strips & ‘guessing’ BG’s only to find out they were out of target & resulted in being sensitive to someone that was unnecessary…or thinking you’re low when you’re high, treating & ending up being really high…because we didn’t have our sexy bag.

3. Being stressed because the infusion set tore out & now acutely making a Plan B to get insulin by injection or an infusion site….because we didn’t have our sexy bag.

4. Having the insulin pump run out of insulin & no access to any for several hours…by the time you get to some you are very high, feel sick & really, really crappy…ugh!! Not sexy!

5. Having the lancet device in your ‘poker’ bend (believe me it’s happened!!) & have no way to check for a full day because there isn’t a sexy bag with a back up…refer back to #2.

6. Having your infusion sweat off to the point of you having to hold in place for hours because the ‘sticky’ stuff is no longer working or accidentally ripping a stainless infusion set out when taking off your shirt to put on a gown for an x-ray. Sexy is having a Tegaderm & infusion site to to stick it down or replace it.

All these events don’t sound so attractive do they?…quite frankly, if you stood back & watched someone have these things happen AND they had pulled out their “Keeping Diabetes Sexy” bag you would’ve thought to yourself…wow, that person has it together, even living with a 24-7-365 disease…that’s attractive!! AND…what is so good looking & sexy about a plain old blue or black case that stores your pens, meter & pump stuff?? Dress them up, make them yours!!

SO….go shopping!! Have fun picking out a bag that says who you are. Fill it up! It’s time for you to own “_____________(insert your name) Keeping Diabetes Sexy” bag….it’s time to make your diabetes sexy!!

Obvious

Image

Obvious

The tabby cat in the picture is Oscar. Yes, he is wearing a cast. He broke his leg in our basement shortly after we moved in to our new home last June. How? We have no clue. Young Oscar just wanted to be cuddled & cared for by our 12 year old Midge. How did Midge sense that Oscar needed some down time & snuggling to heal? Who knows. BUT…it is obvious to anyone looking at the picture that there is a cat with a cast. Something is wrong with him. Shortly after this photo op the cast fell off. For the cost of re-casting & the misery we caused him by doing so we decided to let him heal without it. He limped & hobbled around for several weeks, obvious he still had something painfully wrong with his leg. It was difficult to watch. Today you can not tell he broke his leg just a year ago. Does it hurt him still? Does it ache? Maybe. But as cats do, unless it is serious they can’t, won’t or don’t have the ability to communicate that. They act like all is normal. They keep to themselves & prove they can rebound from the impossible.

I hear time & time again the frustrations of people living with diabetes. Where is the cast, the seizure, the wheelchair, the appearance that tells those around them they have a chronic condition that somedays can make them feel like they’ve been hit by a bus? Aside from having a hypoglycemic seizure what are the obvious signs that one living with diabetes has had a series of highs or lows that have left them feeling like they want to be cuddled & cared for until they feel better? Words can only express the experiences one has. How can bystanders relate?

The frustration for many is to call into work or not go to school because they had 2 low BG’s in the night, woke up really high in the morning & just want to nap a few more hours to get the sugar back on track & clear the cobwebs out of their head. This is near impossible if one wants to continue to be a productive member of society….which is the expectation…because diabetes is not obvious. To the contrary, many living with diabetes attempt to hide it from others, compounding the exhaustion of managing it & recovering from the times of variability that come with it.

There are pros & cons living with a ‘not so obvious’ disease.

We hear about the cons all too much. Let’s focus on the good. Consider anyone living with diabetes that are in the spotlight & those that achieve many feats but have not gained the recognition. Examples which I encourage you to Google & research…Team Novo Nordisk (a team of cyclists competing in various events), Chris Jarvis (Olympic Rower & founder of iChallenge), Sebastien Sasseville (1st Canadian with T1 diabetes to summit Mount Everest, completed the Ultra Marathon Sahara race & 5 IronMan races to date), Chloe Steep (Founder of Connected In Motion), Steve Richert (Founder of Living Vertical), Kerri Morone Sparling (Six Until Me), Shawn Shepheard (Sugar Free Shawn), George Canyon (Country Music Artist), pilots, doctors, nurses, pro sport & not so pro athletes, trades, heavy equipment operators…these are just a few. There are so many it would seem like you are reading the Census in the book of Numbers in the Bible….but far more exciting!!

By living with a ‘not so obvious’ disease, people with diabetes accept that because we appear as ‘normal’ we want to supersede normal, we want to communicate that despite living with a not so obvious chronic condition we can & will accomplish whatever is put before us. We want to prove we are different in a good yet obvious way. Sometimes to the point of achieving near superhuman achievements.

Is that a good thing? I have heard time and time again from many..”I am thankful for my diabetes because I am healthier living with diabetes then if I didn’t.”

Many living with diabetes see themselves as healthier as those who don’t because they become more aware & pro-active in their health. Initially one with diabetes becomes healthier & begin to set goals beyond what they knew existed by no choice of their own but ultimately by the drive, strength & tenacity that become product as a result of the benefits they experience by living that way.

There is an obvious that surfaces by living with diabetes. That is the incredible accomplishments & outcomes that result in living with the not so obvious.

Link

Loss of Control – How Do We Regain It

I urge you to read the link I have attached.  Although it is from the Canadian Diabetes Association, I have read many links which involve Diabetes Associations that exist around the globe.  It seems on paper the protocol is in place if the school board or district is agreeable to implement & support.  Every parent past & present that has a child with Type 1 fight to keep their child safe at school.  The fact that our children are not viewed as ‘in need’ of special care in their daily management of diabetes at school is preposterous.  Every diabetes organization is posting guidelines & lobbying for change but it is happening too slow.  While school boards fight to keep their budgets or manage with less, our children living with diabetes’ risks of adverse events occurring is higher.

Examples to support the lack of guidelines & the situations Kurtis met as a result:

1.  In Grade 5 his class is in a portable.  Soon after the school year starts, Kurtis comes home to tell me during class that day he feels like he is having a low blood sugar.  He tells his teacher.  He tests & confirms.  The teacher sends him by himself out from the portable into the school to the office to get a juice box.  He tells me he is scared.  Two issues:  there are juice boxes in the classroom AND most important, she sends my scared son BY HIMSELF outside to enter the school & walk up a long hall & a set of stairs to treat himself for a low blood sugar.  What if he didn’t make it?

2.  In this same class, it is the middle of winter.  A similar event occurs.

3.  I discuss with the teacher the concern.  She explains she can not expect a student to go with him as they need to be in the class to learn.  She offers she can not leave the class to go with him & leave them on their own.

4.  I discuss my concerns with the principal.  She meets with the teacher & enforces a student needs to go with Kurtis when going to the office for a low…IF….there are NO juice boxes in the classroom.

5.  At one point, Kurtis has a severe low at school.  I meet with the principal & discuss options of having Glucagon for treatment if he becomes unable to take treatment orally.  She informs me the school board will not allow her or the staff to inject Glucagon.  I ask if children that have severe anaphylaxis to bee’s & peanuts have Epi-Pen’s at school?  She says “yes”.  I ask if the staff are allowed to inject the Epi-Pen if such an event occurs. She says “yes”.  I point out to her that both events need life saving injection of a drug.  She counters that she can call an ambulance with Kurtis & by the time they get to the school he will be okay.  I was furious.  How do you educate someone who is such an imbecile?  So stuck on the rules that they won’t consider a child’s life could be at jeopardy?

How did I deal with this?  I made myself on-call regardless whether I was sleeping from a night shift.  If I was working a 12-hour day, I was fortunate my parents were on stand-by.  I made it clear that the school was not to call 911 first (as the school was in the country), they call me.  I knew I could make it to the school quicker than the ambulance could.

Thankfully, with regards to his diabetes, nothing serious happened.

I am not sure how to make an impact to sway school boards to start a standardized protocol that allows for a budget for help in overseeing glucose testing, injecting & bolus of insulin, eating the correct food & bringing attention to the proper person the needs of a child with Type 1.  I do suggest lobbying & pressure by our local diabetes associations as well as supporting them in their campaign is instrumental.  Many voices are louder than one.  I urge you to take part.

Eden’s Journey

Image

DBB FB Eden Blog Pic 1

Hey Everyone! My name is Eden, I am 21 years old, a student, a girl trying to lose weight and well a Type 1 Diabetic. I thought I would share my weight loss journey, and all the tips and tricks that I have found helpful. But first a little about me, and my journey to where I am.
I was diagnosed when I was 17 years old with type one diabetes. It does not run in my family, and I was the “lucky” one who got it ha ha. When I was younger I also battled with a disease called Graves disease, which weakened my immune system (luckily I am still in remission), and the doctors believe that this is why I got Diabetes. While staying in the hospital, I realized that I am going to be on my own dealing with this disease. I had horrible hospital staff, uneducated people trying to teach me about Diabetes! One nurse thought I get my insulin after my meals, and another decided to tell my mother who was in a state of panic, that I may go into a coma at any given minute if my sugars were low….needless to say my mother had a breakdown. It was not a great start to say the least, and has continued to be a crappy situation. So ever since I was diagnosed, it’s been me, my body, and well the internet trying to figure this whole thing out!
So I thought I would write a daily blog post about my weight loss journey I am currently on  It is hard for diabetics sometimes because unlike “normal” people, we have to make sure our sugars are constantly ok…no highs or lows, and our heart rate is okay. I hate using the word “normal” but I think you understand what I mean. I am still trying to figure out what works best for my body, but I have learned A LOT throughout my journey thus far. I have always been slightly overweight, but when I was diagnosed I gained almost 35 pounds….I was shocked. All this happened during the month of my prom and graduation. Needless to say…I hated the photos! I was 205 pounds and I felt depressed, and I still battle with these feelings. It took me a long time to start being healthy. During October 2012 I joined a local nutrition program, and I loved it! I did not follow it completely and I did not do a lot of physical exercise, but I still dropped 10 pounds within the first 2 months! I was so happy, and during December and the Christmas dinners….I lost track of my program. It suddenly clicked in me that why am I doing this to myself? My university graduation is around the corner, and I do not want to feel the same way I did in high school! So in January I started to follow the program. It is a bit hard to change how you eat and I am still learning 😛 I go to the gym 4 sometimes 5 days a week (hard with my schedule of 6 courses, work and homework!) But of course I have had a bit of a battle with my sugars which I think I finally “cracked the code” on. Needless to say I am 174 pounds now….31 pounds down from my heaviest! I would like to be around 145-150 pounds for my height (5’6). My graduation is on May 31, 2013 and I am hoping to get to 158-160 by graduation  It is going to be hard, but hopefully you will all support me  I will share photos of myself, and foods I make….I LOVE COOKING! And anything else I find interesting  Hopefully I inspire some of you with my story, and with my future posts  I won’t lie, it is difficult, but it is not as hard if you have someone you can connect with who understands what you are going through  You can follow me on instagram edenalexandriadaly to see my photos day-to-day 
Until Tomorrow!

Keeping it Even

Image

Keeping it Even

As a parent do you worry about how being fair with your children?

What parent has not heard these phrases ring in their ears, “It’s not fair” or “You love him/her more than me” or “But you let/paid for/told/ agreed that ________________could so why can’t I?”.

It is difficult to learn what is ‘fair’ or how to keep it ‘even’, for that matter, if we should.

Not only am I speaking of rules, decisions, result, how many gifts, how much to spend for Christmas, Birthdays and the multitude of special events throughout the year, failing or passing grades. I think of all these things that I am mentioning and I will say that quality time is the one that is and has been a concern for me.

Why?

The attention required in a family with a child living with Type 1 diabetes is quite demanding. Add to that, the attempt to keep the balance ‘normal’ with their siblings.

I have written a few Blogs about my son Kurtis given that Diabetes Beyond Borders intention is to write about life living with diabetes.

Pictured in this blog is my 21-year-old daughter Cayla at her graduation from Sound Engineering. She has also lived with diabetes. Her life involves looking in from the outside and living with the demands it has on our family.

Cayla is the first person that will email me a link to pictures, articles and studies related to Type 1 diabetes. She has been an impetus for some of the writings I have posted.

I have felt guilt over the years as she saw her brother unresponsive and rushed to the hospital by ambulance from a severe low. She has watched her Mom being carried out of the bedroom with a severe low on the morning of her 5th Birthday. She could write a book of all the events she has experienced living with diabetes. Events and situations I hoped I could protect her from but eventually accepted I could not. She has been a part of it all as much as her brother and I have.

I tried my best to protect her. Give her what she required as a child living with her Mom and brother having diabetes. I tried to keep it even when it came to parenting despite it all. Upon reflection, I don’t think it was the balance I realistically dreamed achieving but I think I did okay.

In the past two summers Cayla has experienced episodes of low blood sugars. It concerns me. During one event, by the time I was able to test her, she was 3.2 mmol/L. She had just eaten. That worries me.

With that being said, all we can do is wait and watch. She is well-educated to the signs and symptoms of the onset of diabetes. She is miles away from me in Northern British Columbia now, but I am confident in the facts with her experiences so far and her education, that she is aware, intuitive and pro active in whatever comes her way. I am happy for her that she can take a break from living with diabetes. I pray that she continues to have that.

I am a Mom living with diabetes, I have 2 children that live with diabetes as well.