A family living well with type 1 diabetes.

Posts tagged ‘awesome people’

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.*

Stephen Richert: A Man Living Vertical.

A few months back I “met” Steve Richert on Twitter. He commented on a link I posted–completely non-D related–and we got chatting. He introduced himself and told me about what he was planning to embark upon come the new year. I was instantly intrigued and impressed.

Steve is an avid rock climber who has started an initiative called Project 365. He plans to climb for 365 straight days in some of the most extreme environments our continent has to offer. With the help of his wife, Stefanie, he will document the journey.

Oh! And he also happens to have type 1 diabetes.

People like Steve fascinate and inspire me and I knew I had to keep in touch with him and watch his progress while he attempted to achieve his goal. As much as I want to believe in a cure for Jenna, the reality is that she may very well have to live with this disease for the rest of her life. I certainly don’t want her to sacrifice a single dream or ambition using diabetes as an excuse. Fortunately, there is no shortage of inspiring people in the diabetes online community and Steve is a shining example of just such inspiration. He is living proof that a person can do anything, be anything and live a rich and fulfilling life with type 1 diabetes. His determination and courage give me hope.

In mid January Steve and Stef began their 365 day mission. In between climbs Steve found time to answer a few questions I had for him and I am thrilled to share his words with you here:

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Sherry: How long have you had diabetes? Would you mind sharing your diagnosis story?

Steve: 13 years as of January 16 2012. I was away from home, living in alaska at age 16. I came down with what felt like the flu and it just kept getting worse instead of better. Blurry vision, thirst, headaches, loss of coordination and I was constantly fatigued. After about a month of this I wound up having seizures and being hospitalized with encephalitis–which resulted in a concurrent diagnosis of type 1 diabetes. There were two days that I completely don’t remember and I just woke up in the ICU. I had been under an incredible amount of stress and it was all pretty disorienting–but once I got out of the hospital, it felt so good to not feel like complete shit, that I welcomed the application of insulin and the whole learning process that went with it.

Sherry: What prompted you to decide to embark upon this incredibly ambitious mission of 365 straight days of climbing in some of the most extreme terrain North America has to offer while managing your type 1 diabetes and what do you aspire to accomplish?

Steve: I want to empower people with type 1 diabetes and other chronic illnesses to think big. To not let a medical condition constrain their dreams–also I want to demonstrate the benefit of being active and eating a fresh, high quality, plant based diet and connecting with nature. Doing more with less (drugs/meds, “stuff”) is both possible and beneficial.

Sherry: You and your wife have taken some risks to make this adventure possible. You have sold almost all of your possessions and are using your savings to help finance this mission. Can you explain what emotions you experienced while you went through the process of preparing for this year long journey? Was there ever a “HOLY SH–! Are we crazy?!” moment? Any epiphanies?

Steve: Risk is an inherent part of life. Living in a conventional setting with an unfulfilled dream in our heart was deemed to be a bigger risk–so we decided to at least try. I think failure and struggle are vital components of human development that we as a society have managed to avoid to our great detriment. I am ok with failing or having to pick up the pieces if the money runs out. You definitely have to go all in and commit fully or else what’s the point? No one lives forever–so do what you can, while you are able!

Preparation has basically been DAYS spent on the computer, wishing I could just go out and climb. Trying to make other people care about this project. The most emotionally taxing part of this has been leaving our home and realizing that if this fails we literally have no home to go back to. Leaving our cat has been SO painful because in our absence he hasn’t adjusted to his new home and has run away several times for a week at a clip with no contact with anyone. It may sound weird but he is my little friend, not just a pet. I have never been a very social person and he (we call him Mr. Kitty or Mr. Bear) has always been there for me when people let me down and it rips my heart out knowing tht he is scared and feeling abandoned. I try not to dwell on that part.

Holy Shit moments? Every single day. Especially at night when your mind just goes to those dark places.

Epiphanies…yes…the little things, the small steps–those are where we succeed or fail ultimately in the big picture of things.

Sherry: You are on injections (pens?). Have you ever been on or considered using an insulin pump?

Steve: I am on pens–never been on a pump. I am not against the idea of a pump but I am used to taking shots and I don’t mind it. I am a fan of simplicity and the fact that it is a lot more affordable. I was offered a sponsorship deal from a pump company that would have cost me 400 bucks a month…needless to say, insulin pens started looking a lot better! I am sure that there are advantages to both–I am just more clued in to the advantages of my system because that’s what I know.

Sherry: As a substitute pancreas myself, I have a keen interest on the specifics of how you plan to manage all that diabetes will, no doubt, throw at you while you are dangling from a cliff in the wilderness. What challenges does having type 1 diabetes present while you are climbing and how do you plan to address them?

Steve: Type 1’s biggest challenge is the variability of insulin sensitivity that goes with varying levels of activity. Also, not being able to carbo-load before a big day of climbing can make it a bit tougher to recover AFTER that big day. Otherwise, you just have to be consistent and check a lot. I find that the quality of the foods I eat makes a HUGE difference in the consistency of my sugar. Low GI foods like Clif Bar Builders Bars and raw almonds keep me from spiking or tanking and give me energy when I really need to pour it on. Basically though I have found that everything is based on cause and effect. If you want to be all ready to roll in the morning, you have to take care of your meal the night before. Consistency is key.

I have redefined my relationship with food as part of being a type 1 diabetic–which is something I see others struggle with or refuse to do. That is their choice, but I can tell you without a doubt that I could not do what I do if I was unwilling to view food as fuel rather than entertainment or comfort. That is part of what I want to communicate to others throughout this project. YOU have the power–no, it’s not easy, but it’s POSSIBLE and you will be better off for taking control of yourself!

Sherry: Although I have never rock climbed before, I would think that it takes a well-planned, methodical, controlled approach–much like managing diabetes does. And yet the unexpected can, and indeed does happen with diabetes. Can the same be said of rock climbing? Do you feel the mental and emotional coping skills you have learned from climbing reflect or enhance your approach to managing your diabetes and vice versa?

Steve: Yes. Climbing is not about some RedBull commercial with a generic heavy metal riff playing in the background. Climbing is about self control, discipline and simplicity. That is the same approach that I have chosen in managing my diabetes and the two are inextricably linked, in my mind. Also, both have risks as a very real part of the equation–which is great motivation not to be lax.

Sherry: What suppplies do you pack with you while you are climbing and how do you tote them?

Steve: I usually take a pack of glucose tabs but I have never opened them. I think I have eaten 2 of them in 13 years. I avoid shooting fast acting insulin when I am climbing–I let my activity lower my blood sugar, which keeps the hypos reasonable and treatable with normal snacks. I carry a couple Clif Builder Bars and my meter–depending on the length of the climb, I may leave the meter down at the base of the climb. If it is one long route that will be an all day affair, then I will bring a small backpack that has enough food to last for several days, as well as my meter. When I was guiding, I would always have plenty of Clif bars to give to my clients because I always pack significantly more than I would eat in a given day.

Sherry: The physical demands of this project will, no doubt, be a challenge to manage and your diet will, undoubtedly, require as much careful consideration as your insulin dosing. Can you explain a little about what you will be eating throughout the year?

Steve: As much whole foods as possible. This means food whose identity can be discerned through simply looking at it, not reading a list of ingredients. Fresh, Raw (when possible). Predominately vegetable matter.

Breakfast: usually raw almonds and some form of oatmeal. Possibly part of a Builder Bar too or a little cheese. Eggs with mushrooms are an option too since eggs in their shell will keep for a good amount of time if you are careful with them. Onions, spinach, work great as add-ins.

Lunch: raw nuts, seeds, a salad (yes greens keep without refrigeration if you are creative!) carrots, crackers, Builder Bar, tuna fish with mustard or sardines, trail mix.

Dinner: salad, veggie stir fry (cabbage, broccoli, sprouts, peanuts, hot sauce, black beans) lentils, whole wheat pasta, raw almonds, sweet potatoes, garlic…and so on.

Fruits are always good too–apples and pears keep magnificently, strawberries…etc.

A few miscellaneous items I have recently explored are kale chips, almond butter and nori–and OH MY GOODNESS I am officially addicted. Sadly I am not going to be able to afford that stuff on a consisten basis, but it is super healthy and GOOD when I earn a treat!

Sherry: The publicity you are receiving by doing this gives you a great opportunity to send a message to other people with diabetes or other chronic diseases. What is the message you want to send?

Steve: YOU have the power to be healthy. Diabetes is a challenge but it does not have to stop you from being healthy. It is our responsibility to avoid adopting a victim mentality.

In the words of Captain Sub-text, “ A little suffering is good for you. If you embrace it instead of bitching, you will be better off for it!”

* * * * *

Thank you, Steve, for sharing your story with me. You ROCK! (pardon the pun. ;))

For more information about Project 365 please visit the website here. You can also check out (and “like”) Steve’s Facebook page where there are many more mind blowing pictures to view!

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.

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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.

World Diabetes Day Postcard Exchange!

If you haven’t yet heard, there is something going on in the global Diabetes community that you really don’t want to miss. Seriously. I mean, this is sheer brilliance. But then, it comes from the creative genius of none other than Lee Ann Thill of The Butter Compartment — the very same Lee Ann Thill who came up with Diabetes Art Day — so I’m not the least bit surprised.

If you submit your mailing address to Lee Ann, she will then forward it to another PWD (Person With Diabetes) and send you the address of that person as well and then you create a postcard incorporating the World Diabetes Day blue circle in the design, then you complete a mini D-meme on the back with details such as your name, your address, your connection to diabetes, etc., then you mail it off to your recipient and that person will return the favour! The idea is to make connections with people in other parts of the world who know the D as you do. It is a way to feel less alone — to connect.

But you should really just head on over to Lee Ann’s blog and read her description. She has all the need-to-know details there for you, including her email addy.

I am really chuffed about Jenna being a part of this. I know she will be tickled to get something in the mail from someone who “gets it”. Heck, she’ll just be revved to get her own piece of mail! And if this becomes an annual event (as I’m confident it will), she will look forward to World Diabetes Day every year for such a fun reason.

Anything that helps Jenna and others with diabetes feel less alone in this, as well as gets people’s creative juices flowing is a beautiful thing.

It’s The Little Things…

Jenna has started full time kindergarten this week. Needless to say, life has been rather crazy and a little more stressed than usual for us.

I have been wanting to write about the whole process we have undergone, that started last June, to ensure Jenna is safe at school yet is offered as normal an experience as possible. This is no easy task and it requires the cooperation of everyone involved — from the public health nurse to the school board to the administrative staff to the teaching staff to the support staff to us – the parents.

It has been quite a journey and I am eager to share it.

And I will share it.

But today I am compelled to share something else — something that will give you some insight into just how wonderful Jenna’s kindergarten teacher is.

I have been spending a great deal of time in a small room off of the kindergarten class to be available to staff requiring my assistance with Jenna’s care while everyone gets used to the routine. But I feel strongly about being “not visible” because I want Jenna’s school experience to be as close to a typical experience as possible — hence the seclusion. I will be gradually tapering my “not visible” presence off as teachers and support staff become more confident. Until then, I am occupying this small, yet comfortable space during the day, nipping out for a half hour or so every day to get my Starbucks fix or run a quick errand.

Jenna’s teacher is amazing. She is one of those people born to teach young children. She has a gift. She is energetic, positive, kind, warm, caring and just plain wonderful. She has invited me to join the teachers in the staff room during breaks and has made a point of making me feel welcome to be present in the classroom whenever I want. It is I who feels strongly about not being too visible. She respects that.

Today when I slipped into the classroom, in super-stealth mode, to make my way to the little room I have been haunting lately — the room I am now blogging from on my laptop — I was surprised, delighted and touched to find this waiting for me on the table at which I sit:

I am enjoying the Egyptian Licorice tea as I write this. Yummy!

The note was accompanied by a jar of different herbal teas and a mug (and I just happen to be a tea enthusiast!) — a kind and thoughtful gesture to help me feel like a welcome part of the team here at Jenna’s school.

I am so grateful for the amazing support the entire school has extended to us as a family. This has been a wonderful experience.

And it’s going to be a great year.

:)

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