A family living well with type 1 diabetes.

Posts tagged ‘diabetes struggles’

The Last Resort.

Jenna seemed fine at bedtime.

The usual routine was playing out — bath, hair wash, a little family TV time before teeth are brushed, hands washed and stories are read. Then the final step before goodnight kisses are exchanged — the blood sugar check: 4.2 with a truck load of insulin still on board from supper.

A couple of carb tabs and another story later, a second check revealed a 2.8. This was NOT what I was expecting. Jenna has seldom had a stubborn low requiring multiple treatments. It has happened, but it’s rare, thankfully. So I gave her three more carb tabs, suspended her pump and stayed with her for snuggles and soft words of reassurance. But there was no hiding my concern from Jenna who is as smart as a whip with intuitive abilities to boot. She knew there was reason for concern. She tried to be silly to downplay the situation. I wasn’t in the mood to be silly back even though I knew she was just trying to cope the best way she knows how. She wanted me to join in this silliness like I often do. Anything to give her the sign that she was okay–that she would be okay.

I checked again and as I awaited the result I closed one eye while keeping the other firmly fixed on the meter (something I do when I’m afraid of what the number might be) and repeated out loud in a quiet chant, “Please be a good number. Please be a good number. Please be a good number…” BEEP. 2.4.

This is when mild concern rounds the corner on two wheels to desperate panic. That’s the wrong way, damn it! WRONG WAY!! If the carb tabs are not working, what the hell else is there?!

Glucagon. My final weapon against this most terrifying of D-demons. But before I proceeded, I posted on facebook for some much needed reassurance from my D-peeps. (I love you guys.)

Melissa, a person with diabetes and a mom, was the first person to give me a virtual pat on the back and encourage me: “You can do this, Sherry. Do whatever you have to.”

It was precisely what I needed to hear, even though the moment I read it I had to leave the room so Jenna wouldn’t see me bust into a full blown cry.

I went straight into my bedroom closet to where I keep the glucagon along with all of the diabetes supplies. I retrieved the kit from the travel case that accompanies us on all overnight trips away from home while flashbacks of the last time I had to employ this lifesaving intervention pelted my conscious mind like hail stones falling from a slate black cloud.

Blinking away the tears so that I could see what my hands had to do, I pulled out the contents of the kit on my bed and began reconstituting the white powder in the glass vile with the pre-filled intramuscular needle that comes with the kit. I remember thinking that at least I wouldn’t have to use that needle to inject Jenna since mini-glucagon dosing is done with a subcutaneous insulin syringe instead. That would be little consolation to Jenna, however.

I drew up the six units of glucagon (one unit per year of age) and with the needle hidden behind my back I entered Jenna’s bedroom once more. Jenna was upset now and kept telling her Daddy that she was tired and just wanted to go to sleep. She knew I had something in my hand and she knew what it was.

“No mommy! No mommy! Please NOOO!!”

I did what had to be done and left the room again to stomp the shit out of my bathroom floor while letting the tears come.

It wasn’t the fact that I had to give Jenna a needle. I don’t have a problem with that. It was giving her something I had never given her before that really upset me. Glucagon is a last resort. It is harsh. It gets the job done but it can really kick the shit out of the person receiving it. Vomiting post glucagon is not uncommon. How would she react to it? What will the rest of this night bring?

Jenna was craving toast. Before I gave her the glucagon she kept saying she smelled toast and how good it smelled to her. So as a way to wrap up this upsetting end to an otherwise great day, I invited her and her sister back downstairs for a late night, post bedtime toast snack.

Later as I was settling Jenna back in bed with a post glucagon blood sugar of 9.9, I told her she was okay and it was safe for her to go to sleep now. Jenna became emotional. She hugged me and told me how thankful she is to have a nurse for a mom who “…know[s] how to make it all better.” I told her how lucky I am to have her for a daughter and how amazing I think she is.

“I think you’re amazing too, Momma.”

We hugged more and then Jenna told me with her chin quivering and her eyes flooded with tears that when she grows up she wants to marry a man with type 1 diabetes so that they can take care of each other. This glimpse into Jenna’s thoughts made me realize just how much she gets the seriousness of her diabetes and how alone she feels at times facing the challenges diabetes presents.

I think this is one of the most heartbreaking aspects of being the mother of a child with diabetes: to watch her gradually lose her innocence and awaken to the reality of life with a disease that never sleeps and can turn on you without warning. She is thinking about her future with diabetes. And not just tomorrow, but 20 years down the road! A six year old little girl who still loves to play dress up, play with dolls, skip, ride bikes, blow bubbles and play in the mud should not have to worry about such things. And yet, a part of me is relieved that she is aware and gets it, as much as it hurts my heart.

I’ll be up several more times tonight — Jenna’s blood sugar is lunar bound and I just heard her awaken and take a big long drink from her water bottle. Last check was 16 mmol/l. This roller coaster ride is far from over.

*Nothing here should be construed as medical advice. Please consult your healthcare team of professionals if you have any concerns about your or your child’s diabetes.*

Super Powers? Don’t All Moms Have em?

The prompt: If you had a superpower — what would it be? How would you use it?

When I was a kid, my Mom could make it all better. Somehow, her hugs and kisses just did. Even if she really didn’t actually make it better — for me, just her TLC was enough to make me feel better. It is the magic Moms possess.

Kids want Mom when they don’t feel well.

Jenna doesn’t feel well when she has a high or low blood sugar. This means she doesn’t feel well on a daily basis. She musters through, sometimes without missing a beat and no one is the wiser. But other times, the glycemic ride from hell can knock her flat on her little scar tissued posterior. She wants hugs and lots of em. She wants snuggles with Mom on the couch. She wants a gentle voice telling her she is going to be okay. She needs to feel safe and comforted. And during those times there is no place on earth I would rather be than with my little girl snuggled in my arms.

Superpowers? I’m a Mom. I’m good to go.

Jenna had a low tonight at bedtime. I employed my ‘superpowers’ to help alleviate the symptoms. Also, three carb tabs.

Health Time Capsule

For the month of April I am participating in the WEGO Health Activist Writer’s Month Challenge. This means I shall attempt 30 straight days of blog posts–one for every day in the month of April. I’m not going to lie to you, I have my doubts that I can pull this off. In fact, I’m already off to a less than stellar start, given that I’m a day late with my first post.

But that doesn’t matter. I will give it my best shot and aim to make a quality contribution to this event rather than push for quantity that may be lacking in interest and passion. I enjoy the challenge of writing from prompts but if I’m not feeling it, I’m not going to post something that I’m not proud of or pleased with. So on that note, here’s the first prompt and my humble submission follows:

The prompt: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

Hello people of the future. I am the mother of a child with type 1 diabetes. I’m sure you have heard tell of this disease of the past–a heartbreaking, life-long sentence of finger pokes, injections, blood draws, doctor’s appointments, high and low blood sugars and the ever-present fear of devastating complications. It most often struck our young children, suddenly and without warning. But no one was safe, really. You are very fortunate to live in a time when this disease is merely a part of human history.

Type 1 diabetes was physically, emotionally and mentally exhausting for the people who lived with it every day. The demands of diabetes were at times immense. Imagine having to check your blood sugar by poking your finger and summoning a drop of blood anywhere from 8 to 12 times a day or more. Imagine having to count every carbohydrate you consume and calculate the dose of insulin needed to inject to ensure your blood sugar doesn’t shoot to the moon. Imagine having to have access to a considerable arsenal of medical paraphernalia at all times to stay healthy and alive. And imagine that no matter how diligent you work, no matter how hard you try you often don’t get it right. High and low blood sugars were a given–a part of everyday life. That’s just the nature of this beast.

I have included in this time capsule a copy of the blog I started and kept for years after my daughter’s diagnosis so that you might know more of what this disease was capable of and how it affected entire families. I have also included all of the items type 1 diabetics required to be at their disposal 24 hours a day, every day to live. They include:

  • blood glucose meter
  • blood glucose test strips
  • lancets
  • lancing device
  • carb tabs
  • blood ketone meter
  • blood ketone test strips
  • urine ketone test strips
  • insulin
  • insulin syringes
  • insulin pump
  • insulin cartridges
  • infusion sets
  • batteries
  • sharps container
  • continuous glucose monitor

We lived in an age that saw technology propel forward at a dizzying speed! It was incredibly hard to keep up with the latest technological gadgetry pertaining to communication and entertainment. One could go broke trying. Yet the diabetes devices and pharmaceuticals of our time were shamefully behind the times.

For the last 30 years of the 1900’s a cure was repeatedly promised to be “just steps away” or “no more than 5 years down the pike.” Finally, doctors stopped making these promises with such reckless abandon. People got wise … and maybe a little cynical too. The focus started to shift more toward treatment and prevention–not solely on a cure.

To be personally affected by type 1 diabetes is to experience a full range of emotions to their most extreme degree. It isn’t easy to cope at times. It is difficult to trust that those in the business of finding better treatments and cures are really committed to looking for that which will ultimately put them out of business.

But at the end of the day, it’s all that the people living with diabetes and those who love them have.

We must believe.

I must believe.

This is why I have written this with optimism and hope. You must know what a world without type 1 diabetes looks and feels like. In 100 years, surely the break-neck speed at which wireless communication advanced in our day finally found its way to the treatment and curing of chronic and deadly diseases such as diabetes.

…all the walks, marathons, fund raisers, the billions of dollars raised…

We as a species must have gotten our priorities in order by now … haven’t we?

I try.

I sit quietly with my cell phone to my ear, listening while Jenna takes instruction from her support worker on what numbers to program into her pump to give herself her morning snack bolus at school.

“Okay. You are going to eat 36 carbs, so make that number a 36. Three – six.”

“Okay. Three – six?”

“Yep.”

A few seconds pass while Jenna presses the up button on her pump. When the pump flies past her goal (the numbers tend to get away from you if you just hold the button down which can be frustrating) she presses the down button to make the number what it needs to be.

“Oops — You went past.”

“I know…”

“THERE! That’s it. Okay, now you press OK. Good. Now you are going to enter your BG. What was your BG, Jenna?”

“14.6.”

“Right. Good job. Okay. So you make that 4.4 a 14.6.”

“Okay. 14.6.”

“That’s right.” More time passes and I listen to the din of children in the background chatting and laughing while they eat their snacks as Jenna toggles up to enter her rather high pre-snack blood sugar reading into her pump. The seconds start to feel like minutes. I know Jenna also hears the other kids — her friends. I know she wants to join them.

“Oops. You went way past, Jenna. Okay. Focus, my friend.”

“Ooops!!”

I hear a sigh of frustration from my little girl. I feel my jaw muscles tighten and I take a sympathetic deep breath for her. I talk to her in my mind. I don’t want to add to the frustration by chiming in. Just stay calm, Jenna. Focus.

Then Jenna’s support worker gives further encouragement,”C’mon, Jenna. Look at your pump. You’re almost there. 14.6.” I imagine Jenna is looking back at her classmates who don’t have to jump through such tedious hoops before they eat their snacks.

Then, in frustration, Jenna blurts out, “Why don’t you just do it?”

Her good-natured support worker retorts, “Ha! Because it’s your job, missy!”

And there it is.

It’s Jenna’s job to give herself her insulin, a life-saving (and potentially lethal if overdosed) drug. She’s five years old and she must do this. She doesn’t know that her support worker isn’t allowed to even touch her pump, let alone give her insulin.

Jenna often doesn’t want to be bothered with bolusing herself for every carbohydrate containing snack or meal she eats. She has worn an insulin pump since she was two years old — far too young to administer her own insulin dose. Oh sure, she would, on occasion press the OK button to initiate the actual bolus after I or her Dad had done the programming. But Jenna has been spared the monotony of bolusing for most of her diabetic life. She has been doing her own snack boluses at school for several weeks now and overall, she has rocked it. And I know that the more she does it, the easier it will be and the faster she will get at it.

Even still, no matter how fast she gets at it, it’s not what most people have to do before taking in nourishment. And it’s always prefaced by the ubiquitous blood sugar check. There are just so many damn HOOPS! Is it any wonder I worry about what the future holds?

I remember in my nursing training, when we were covering diabetes, we were taught that during the teen years it is common for teens to rebel when it comes to the necessary minutia they must constantly carry out to stay healthy. It is so common, in fact, that the training we received in caring for teens with diabetes focused heavily on our verbal interactions with them and the psycho-social implications of this disease on this particular age group. And then, as if to punctuate this theory for me, during my corresponding practicum for this unit, I was assigned to a teen with diabetes who had been admitted with diabetic ketoacidosis and was undergoing further patient teaching as part of his recovery.

It was a long time ago, and I don’t remember much detail, but I do recall getting a sense that this teen was struggling. The struggle was just as much emotional as it was physical. He seemed sad. Perhaps even depressed. I felt so inadequate. I felt like I knew nothing of what this young person was going through. I felt ineffective and in over my head. I was only in my early twenties at the time and this diabetes deal that I was just learning about seemed like such a heavy burden for any person! For a teen? It must feel like the biggest bullshit, shitty hand anyone could ever be dealt. How on earth could I be of any help to this person? I was young, in training, and knew nothing of the ever-present, constant, worrisome, unpredictable, obtrusiveness that is diabetes.

I was a good student and I imagine I did my best with this patient and tried hard to NOT sound like I was reading from a script in my verbal exchanges with him. Honestly, I think I was relieved when my assignment changed. But the sadness that was so tangible stuck with me. I knew this young man was dealing with demons I knew nothing about.

And now here I am, the mother of a child with diabetes. I don’t need to tell you I have my fears. I work hard at keeping them in check. I try to look at my past professional experiences with diabetes not so much as warnings of what lies ahead but as wisdom, if put into proper perspective. I keep reminding myself that just because it is common enough to be taught in nursing theory classes and just because I happened to be assigned to a teenager recovering from diabetic ketoacidosis due to lack of self-care from typical teenage rebellion, doesn’t mean my daughter will do the same thing.

But I know how hard this disease can be. I know how exhausting and maddening it is. I know how much it can mess with your head. I also know how much being a teenager messes with your head. I’ve seen these two forces collide. I’ve seen what can happen. Teenage years + diabetes = the perfect storm for noncompliance (a term I now loath but is all too common in the medical world) and disaster.

I try to not worry so much about the future. I read about other people’s experiences and try to glean from them what is useful without causing myself too much unnecessary, premature aging worry. I try to stay positive. I try to have faith in myself and my amazing, strong, smart little girl. I try.

… but it’s hard sometimes.

Sickies in a Blanket.

Mommy and Jenna,

Both sick with a flu,

Snuggled together ‘neath a blanket

Or two.

Fevers and coughs and aches

We both share,

But Jenna has ketones;

They’re trace–but still there.

 We’re sipping fluids-

We’re resting and snoozing.

The cartoons on the TV

Are not of my choosing.

For this mommy to worry

Is really not new,

But to fret in this febrile state…

…ah…AH…ACHOOOO!!

I can handle a lot,

Countless times I have shown,

But a little back-up today

Would beat D-parenting alone.

That’s all I got. *sniffle*

Revisiting Our Early Days With D

This morning as I scrolled through my Facebook feed I read a post by a fellow D-Mom, Meri Shuhmacher, who blogs over at  Our Diabetic Life. Her post explained how she has noticed that her son has only been doing blood sugar checks on two fingers — his pinky and the finger next to it —  instead of using all his fingers (Jenna insists on this as well, only it’s her two pointer fingers that get picked on mostly).

In this post Meri goes on to tell how she asked him why he is doing this. He explains that he is “creating a shield”. (This made my D-Momma heart ache a little, I confess.) Her post was accompanied by a picture of a close-up of her son’s hand with calloused little digits that looked all too familiar. It brought me back to that first year after Jenna’s diagnosis and a post I wrote on September 15, 2008, just three months after Jenna’s diagnosis, discussing this unavoidable finger fate of all people with type 1 diabetes. It also brought back the heartache that I endured around the clock during that first year. We’ve come so far…

Here is a reposting of that blog post I wrote, because sometimes it’s good to look back and see how far one has come.

*     *     *     *

A Diabetic Rite of Passage

It was inevitable. We were warned about this by our diabetes nurse in hospital when Jenna was just diagnosed. I wasn’t the least bit phased by it at the time, but now that it has happened, my heart hurts for my little girl.

The tips of Jenna’s two index fingers have developed little callouses from the constant pokes with the lancet to test her blood sugar. My two and a half year old, beautiful little girl now sports the trademark of a seasoned diabetic.

I know it isn’t that big a deal, and I am without a doubt thankful for my blessings. It could be so much worse. But still I feel that familiar feeling of sadness that I felt so acutely upon her initial diagnosis every time I push that spring loaded trigger button and squeeze out her precious blood, drop by ever-loving drop.

When Jenna was first diagnosed, I remember friends and family saying that if she had to get diabetes, better now while she is so young. I remember at the time feeling both grateful for this small mercy and profoundly saddened by it at the same time. On the one hand, yes it is true that Jenna will be spared having to change habits that had been years in the making and will never mourn the loss of her far less complicated,pre-diagnosis days. But on the other hand, how tragic that she will never know what it’s like to occasionally eat with reckless abandon, or to run out the door to play with only the clothes on her back and not have to worry about packing glucose tabs or her glucometer with her, not to mention her ever-present insulin pump strapped to her little waist.

The thought that really gave me pause was the one that popped into my head within the first 24 hours of her diagnosis; My daughter can’t survive without the help of modern medicine. Jenna is sentenced to a lifetime of being a heavy consumer of pharmaceuticals for her very survival. She will never know any different.

Jenna is becoming more curious about her diabetes. She is asking questions and making statements, looking for confirmation and reinforcement, saying things like, “I have diabetes, right? I need my pump, don’t I?” I know she is attempting to understand and deal with it all. I also know that this is just the tip of the ice burg. Over the years there will be many more of Jenna’s questions to answer and emotions to feel and they aren’t all going to be as positive and accepting as they seem to be now.

I guess in the grand scheme of things a couple of little callouses isn’t the end of the world. But to me they represent all the pain, and trials Jenna has had to overcome and everything she has yet to endure throughout her life with diabetes. And because of that my heart breaks a little everytime I look upon those precious little two year old fingers.

…but the testament they are to her strenth and courage is what makes me fill to bursting with pride.

What’s Funny?

Let’s dispel a few myths, shall we?:

  • Your eyes won’t stay that way if you cross them. You may turn a few stomachs doing that, but your eyes will return to their normal position again, rest assured.
  • You won’t get a sty in your eye if you pee on the road, but you may just get arrested so don’t, okay? (I can’t be the only person who’s mom shared that little gem, can I?)
  • And finally, you can’t — CAN NOT! — get diabetes from eating too much sugar. Seriously.

You see, type 1 diabetes is an autoimmune disease. The body’s own immune system has made a mistake and turned on the cells in the pancreas that produce insulin, killing them and leaving their owner without a means to process the glucose ingested from food.  So people can stop with the inaccurate “jokes” regarding the eating of large quantities of sugar and the onset of diabetes.

Now, I know what some of you might be thinking: What’s the big deal?! It’s a joke! Can’t some people take a JOKE?! Why are you touchy people ruining it for the rest of us?!

Well, first of all, if your life’s happiness hinges upon feeling free to use false and misleading information to make fun of people with chronic illness , you have far worse things to concern you. Like the fact that your sense of humour SUCKS, just for starters.

See, the thing is, I love a good, leg-slapper just as much as the next person. In fact, there is a good case to be made for those of us facing serious life challenges and our increased ability to find the humour in them. But the joke has to be funny. And here’s why these sorts of jokes aren’t funny. First, a joke has to ring true. People have to be able to relate to it. If the joke were about a person with diabetes having to nip off to the loo frequently, well, that could easily happen. A rip-roarin’ bout of hyperglycemia can leave a person with a raging case of polyuria. Or if the joke were about a person with diabetes unknowingly walking around with used test strips stuck to her person, again — could happen. In fact, I’m living proof that it does happen. And it’s funny when it happens! Hell, you should see some of the places I have found used test strips! Uh … on second thought …

But a lame joke that perpetuates a misconception that leads the public to believe that people with diabetes are responsible for getting this disease, I have to draw the line there. There’s nothing funny about people asking you if you gave your child candy as a baby causing her to get diabetes. There’s nothing funny about people judging you or your child to be deserving of a horrible, all consuming, potentially life-shortening disease like diabetes.

Right now I am the one absorbing the emotionally taxing blows of insensitive, uninformed comments because Jenna is so young. But one day she will be the one facing the full impact of jokes and comments made by an ignorant, overly judgemental society. It will become her battle as well to set straight the uninformed among us. And it’s important that she does. If society mistakenly believes that people with diabetes are reaping what they have sown, then the public’s financial support to fund research for better treatments and a cure will be affected by this inaccurate depiction. And we can’t afford to lose donations toward a cure. This disease is on the rise. No one asks for diabetes.

Oh. And for those who are screaming “TYPE 2, you over sensitive Mom of a kid with diabetes! We are laughing at people with type 2 diabetes!!” — first of all, shame on you. Secondly, you should know that there are plenty of fit, slim, otherwise healthy people  out there with type 2 diabetes. Sure, it’s more common among people who are overweight, but it isn’t an exclusive club. There is a genetic predisposition at play and other factors which are not fully understood. And so what if being overweight does contribute to the development of type 2 diabetes in some people? The majority of us in the western world are above our ideal body weight!  Being above your ideal body weight increases your chances of developing other diseases too, like cancer. Would we say of an overweight woman battling breast cancer that she had it coming? How the hell do we know what factors caused someone’s disease? What does it say of our society if we believe those among us fighting disease are merely lying in the beds we made? Are we really that heartless and judgemental? What makes us think we are immune from suffering chronic illness and can therefore make disparaging remarks about those that do?

Be informed. Set people straight. Don’t be afraid to be the only one not laughing at the inappropriate,  callous and misleading “joke”. You never know when this disease — whatever type — will hit too close to home and you’ll wish you’d been a little more sensitive and a lot less judgemental.

Enabling Independence.

Jenna is almost half way through her first year of school. She loves school! Kindergarten has been fun, exciting and full of growth and learning, not just for Jenna but for me as well. I’ve come quite a way from the worried and nervous mom I was at the start of the school year.

We have a routine now and it seems to be working quite nicely. We have found ways of doing things to ensure that Jenna has virtually the same opportunities as any child does while attending kindergarten and still remains safe. I can, in part, credit her student support worker (SSW), her teacher and the school for this success.

Oh sure, we’ve had a couple of hiccups along the way. We are, after all, blazing a bit of a trail here. There aren’t many children with diabetes as young as Jenna and on an insulin pump in the school system here. And every family has their different ways of managing their child’s diabetes. But with good communication and the setting aside of some egos, we (myself and the staff) have managed to maintain respect for one another’s perspectives while achieving our common goal of ensuring Jenna is safe and happy while at school.

At the start of the school year we set a goal for Jenna to start doing some of her own bolusing by Christmas while she is at school with the supervision of her SSW and with my telephone guidance. Presently, I go to the school twice a day, for morning snack and lunch to administer her insulin doses as no staff members at the school are permitted to do so. However, Christmas time is never a good time to initiate a new plan. So we all agreed to hold off until the new year when the dust of the holidays has settled and we are back into the groove at school.

So here we are, well over three weeks into the new year and back into our routine. Jenna is no stranger to bolusing herself with either my or her dad’s supervision. We have handed her her pump and walked her through the process on many occasions. But her motivation is lacking because, well, she’s a kid and she doesn’t want to have to take the time to engage in such tedious matters as inputting carb info and blood sugar results into a mini computer to receive an insulin dose recommendation then input that number and press GO prior to eating a yummy snack — not when Mommy can do it in a third of the time while Jenna can dig in and enjoy social time with her friends.

What kid would want to do that?

But, of course, she has to do that. This is the next small step in Jenna’s slow journey toward independence. So we’ve developed a little incentive program for her at school with the help of her teacher. Jenna is expected to give herself her snack bolus three times a week, on Mondays, Wednesdays and Fridays, with supervision from her SSW and my counsel via mobile phone. She will receive a check mark on a special chart that her teacher has devised and at the end of the week, provided she has met her three-check goal, she gets special play time privileges and she gets to chose a friend to join her for this reward.

Sounds great, right? Well, we shall see. This plan is to be implemented today. In fact, I am going to park outside the school in about a half an hour to do our first phone bolus and still be close enough in case any unforeseen issues should arise. I slid the little, bare-bones cell phone we purchased last week into Jenna’s lunch kit this morning, ready for that first call. I will keep you posted.

The other little dilemma was, how do I provide a mobile phone for Jenna to use at the school to communicate with me for bolusing without it seeming to my 8 year old daughter –who is already asking, and has been for some time now, when she will get her own cell phone– like I am giving my 5 year old her own cell phone? I have had to be careful of language; I don’t refer to the cell phone as “Jenna’s cell phone”. That would give the wrong message to both girls. I explain that it is Mommy and Daddy’s cell phone. Of course, it was a bit of a hard sell for Jaz. But she does understand. Incidentally, Jaz has been bolusing Jenna lately on some occasions as well, and she is a pro at it. Yes, things are progressing nicely. My little girls are growing up.

It’s bittersweet, really.

Update: SHE DID IT! She just gave herself her first bolus without J or I present! I heard her little voice over the phone and I distinctly heard pride as she input the info and pressed GO, giving herself her insulin dose without me there. And I find myself oddly emotional about this rather huge step toward her independence. It reminds me of the first time either of my girls tried solid food after being strictly breastfed. Ah, but it’s all good. She’s taking the reigns. Slowly but surely, she is taking charge. :)

Diabetes and Doctors.

I’ve recently found myself in the upsetting position of having to defend the 8 to 12 blood sugar checks we perform daily on Jenna to a pediatrician. It was during a routine check up. An a1c drawn at this appointment revealed pretty darn good control at 7.8. Still, this medical professional felt that checking Jenna up to 12 times a day on occasion, was excessive.

Jenna does not wear a CGM. For those who read my blog but don’t live with diabetes daily, first – thank you. You give a damn. You want to learn more. That’s so awesome! Second – a CGM (continuous glucose monitor) is a device that has a sensor which is inserted under the skin and stays in place for several days, measuring blood glucose in interstitial fluid many times throughout the day and night. It is a great piece of technology, but it has a ways to go before it is a consistently accurate and reliable way to monitor blood sugar. We are waiting until the technology improves before investing money and subjecting Jenna to yet another jab and another device to have to wear. In the meantime, regular blood sugar checks are necessary to ensure Jenna is safe. This means we get up every night, sometimes more than once depending on the circumstances, to perform blood sugar checks.

You see, each reading is merely a snapshot. She may be 5.8 at 10:00pm – an excellent reading, but what you may not know is that she is headed down fast because of the insulin on board from that bedtime snack she had or the extra hard playtime when she ran for an hour solid earlier in the day! By midnight she could be 2.1! The only way to know is to check.

I left the doctor’s office that day feeling so many emotions – anger, frustration, annoyance – but the worst, the absolute worst was the self-doubt and shame I felt. I actually let this doc get to me! I questioned whether we were doing the absolute best we could be doing for our little girl. He made me feel like we were setting Jenna up for failure with our diligence. How would she be able to pick up the baton when it was time to hand it over to her? This question was posed to me as I defended our nightly blood sugar checks to ensure her safety. He stated that if it were him, he wouldn’t be able to function on the broken sleep we were getting.

Never mind that I made the valid point that she will not just suddenly, one day, be charged with her entire diabetes management – that it will be a gradual process that has already begun that won’t overwhelm her. No, he felt we were setting the bar too high and needed to pull back. He then went on to assure me that Jenna would awaken if she were to go too low. Absolutely, for sure. Without question.

Now, the whole idea of checking and monitoring is to avoid highs and lows. AVOID them! Not to let them happen and deal with the low when it materializes in whatever frightening form that may take, i.e. seizure, or worse. I DO NOT want to have to administer glucagon, call the paramedics and pray that my daughter survives, all because I needed my sleep. We have survived the past three and a half years getting up in the night to ensure Jenna is safe. We have adapted, just as countless other parents have done. And I happen to know that not all people awaken when their blood sugar drops too low. Tragedies happen only too often. How does this doctor not know this?

I was a broken woman when he was finished with me – as broken as Jenna’s pancreas. I never want to feel that way again. And I never, ever want another parent of a child with diabetes to feel that way.

Being a pancreas to a child who’s own pancreas is busted is NOT easy. It is a constant, demanding, ever-changing, exhausting, unruly, scary, unpredictable, 24/7 job. No breaks – no holidays. Any parent who does this – any person with diabetes who does this – deserves respect and support – NOT criticism.

I recently read a quote written by another mom of a child with diabetes that sums it up beautifully:

…I have learned that it is not just about the needles and the numbers –it is about the constant burden of having to perform a critical body function externally . Think for a minute about having to tell your heart when to beat…and how fast. Imagine what it would feel like to know if you slipped for a moment what the consequenc es would be. It can be a heavy weight to bear at times.

Just for the record, I did tell this doc that, with all due respect, I was the parent of a child with diabetes – not him. But I did let what he said hit too close to my heart and I shouldn’t have. It took me days to recover from it. But with the help of my husband, who was furious at this doctor for making me feel so inept, and the reassurance of members of the diabetes online community who validated my diligence and questioned this doc’s knowledge of type 1 diabetes, I bounced back stronger than before. I felt reassured that I am doing the very best I can to keep my daughter safe and healthy and I shouldn’t have to defend what I do to ensure that goal is met every single day and night, especially to someone who doesn’t know what it is like to be a satellite pancreas – medical degree or not!

To the doctors out there: I urge you to tread carefully when you are sitting across from the parent of a child with type 1 diabetes, or a PWD. I know your intentions are good, but unless you have a child with type 1 diabetes, or you have diabetes yourself, you can’t possibly know what it is like to do what we do. Be positive, supportive and understanding. But above all, please be humble. Know that each diabetic person’s disease is as unique as a fingerprint and the approach to managing it can be just as varied and individualized. We are all doing the best we can. It’s not easy and some days are harder than others. You are merely one member of a team in the management of this disease; you are not the definitive expert, as hard as that may be for some of you to accept. Also, a little praise goes a long way. A pat on the back for the 7.8 a1c would have been nice.

Luckily, we had a check up appointment with Jenna’s endocrinologist two days later and received the positive reinforcement and validation we so desperately needed. We always have a positive experience when we see Jenna’s endocrinologist – who, by the way, feels that we are, in no way, paranoid or checking Jenna too much. As always, she applauded our efforts and praised our approach. I am so grateful for her.

Tech Support Needed!

One of the many perks of pumping insulin with the Animas Onetouch ® Ping has been the software that comes with it. I used to take Jenna’s pump and meter and snuggle up to my PC, cup of tea in hand, download the data from the past two or three weeks, print off a couple of charts and then pour over the numbers looking for trends. This would help me to determine whether changes to Jenna’s settings were needed. This was especially useful to do the night before an endo appointment. Jenna’s endocrinologist appreciated receiving our package of printed out data. She could easily glance at Jenna’s blood sugars and advise us accordingly.

And then we moved. Our PC is no longer in service and we have jumped ship to Mac. The software that accompanies the Animas Onetouch ® Ping isn’t compatible with the operating system on my Macbook.

And our endo appointment is creeping up fast as well as a pediatrician appointment. I know I could resume logging all of Jenna’s numbers and carb counts on paper, as well as the bolus amounts and the kind of bolus. But MAN! That kind of sucks. Logging numbers is a royal pain in the keister. Ask any PWD and they’ll tell you, logging is a loathsome task. And what makes it so abhorred is the inability to stick to it. It is already a challenge to do all the absolutely necessary steps involved with maintaining this disease — adding this extra step is like asking someone to balance their cheque book. Several times a day. Every. Single. Day.

I was diligent about logging when Jenna was first diagnosed and was on multiple daily injections. But that was before I got a taste of the good life with diabetes software keeping impeccable records for me and laying it all out in beautiful, colourful charts and graphs. Now I always start with good intentions and a brand spanking new pretty journal (the theory being that if the journal is new and pretty, I’ll stick to my logging) but I derail rather quickly, sometimes as early as later the same day. Sad. I know.

I miss my software and all it’s fancy charts and graphs. I miss being able to see trends and make the necessary adjustments to pump settings. I feel like I’ve been trying to manage Jenna’s diabetes with one arm tied behind my back.

I’ve spoken to our Animas rep about it and he seems to think there is a way. But when I call Animas and ask, I’m told that there is a compatibility problem with the ezMax software and Mac operating systems. I’ve been put on a list of people that need to be informed as soon as the problem is resolved, but that was months ago. I have heard nothing.

And my withdrawl is escalating.

Jenna’s numbers have been pretty crazy lately. I sense that some changes need to be made but I have no way of seeing the trends to make these changes. I am getting my pen and paper ready because I know what must be done. It starts with an L and rhymes with dog. But oh, how I loath using such primitive devices. I’m far better with a hard drive, a dongle (what screwball came up with that name, by the way?) and a printer.

I could really use some advice or information on how I can install the ezMax software on either my Macbook or my desktop, if it’s possible at all. Has anyone used this software successfully on their Mac? If so, please tell me how you did it. PLEASE?

Follow

Get every new post delivered to your Inbox.

Join 1,066 other followers