Tag Archives: T1D

100 – 1,000 – 1,000,000 miles for a Cure. I can take a nap later.

photo(100)A storm was rolling through town. We were hanging out in the basement enjoying the thunder and change of weather.

Logan was laying on his bean bag chair, watching a movie on his DS, looking pretty relaxed. I of course had this twinge of guilt, “He should probably be reading right now,” I thought to myself.

As I walked past him to get the laundry he said “Mom, my legs are so weak, lift them up, I can’t lift them, if you let them go they’ll just drop to the ground.”

I didn’t think twice about it. He had lunch not that long ago, his number was in range, 136, and not that much time had passed. I just chalked it up to him goofing off, he’s a man of comfort and likes to relax, plus his numbers were good.

Still, when I walked past him again I wondered if I should check his blood sugar, no….that doesn’t make sense, he just had a banana, pb & j and a choc. chip cookie. I really don’t want to poke his fingers, he’s good. I look at him and he’s content, watching a movie on the DS. We’re good.

But I can’t let it go. I go through his numbers in my head, his blood sugar, how many carbs, how much insulin, it all adds up. But it doesn’t, because when I look at him again he looks completely sunken into the bean bag like his body weights four times as much as it actually does. Just as I go to grab his kit he says, “Mom, my legs are soooooo weak.” and I realize he’s slurring a little bit.

His blood sugar was 38. I didn’t panic, I usually don’t. I’ve always focused on not panicking in hopes that Logan will learn not to panic when it happens when I’m not there to help. Stay calm, don’t panic, take action.

My insides might be praying like nobody’s business, but my outsides are calm as I reach for the raisins. (He doesn’t drink juice or milk and hates the glucose tablets,  knock on wood  that he has always been able to chew, so raisins and m&m’s are our go too sweet when he’s low, or we could use the tube of Cakemate we keep in his kit).

I quickly do the math and before I can unfold my hand he grabs the raisins like he hasn’t eaten in weeks. He reaches for the rest of the raisins and some of them fall onto the floor, he starts to panic, he gets frustrated, he can’t get them into his mouth fast enough. I tell him that it’s o.k., to slow down a bit and then he moans..”Mom, I’m starving..I want M&M’s, pleeeease, I need M&M’s“.

I count out some M&M’s and hand them to him. He shovels them into his mouth as he sits on the bean bag moaning. His body is trying to figure it all out, “…am I low, am I high?“, the sugar is playing catch up and its doing its best to increase his blood glucose. Like me, it’s trying to find a middle ground and in the mean time it’s making him feel both ravenous and miserable. Very miserable.

I watch him. I look at his eyes, his posture and I rub his back (no scientific reason for it, just for my own well being, not sure that it helps raise his blood sugar but it makes us both feel better). I add up the number of carbs that he ate, waiting for him to ask for more, I know it’s coming because when he is low he could eat breakfast, lunch and dinner all in one setting.

I set the timer for 20 minutes so I can check his blood sugar again and make sure it’s going in the right direction. When I check it, it’s only 54, which is frustrating, it could just be slow moving, or he could have been lower than what the meter read.

I ask him how he feels, he’s slow to respond but says, “…hungry and my legs still feel really weak…“, and then he asks for a grilled cheese sandwich and an apple…and a hot dog…and can he please have some cheese and crackers. At least he’s not slurring.

He insists on going upstairs. I hesitated. I wanted him to stay put for awhile to get his ‘legs’ back but I also wanted him upstairs where I could see him.  His idea was the best idea, so I help him up the stairs. While he’s waiting for his food he begs for more M&M’s and raisins, “Mommmmmm, please, I’m starving“.

I hate not giving him more food because of how he’s feeling, and it’s hard to say no sometimes, but from experience I know that pretty soon his body will sync up and he’ll feel better. He won’t need the extra food, we just need to get his blood sugar back up so his brain can tell his body that he’s good and that he doesn’t need to eat.

Luckily I get him to wait, reminding him that this happens, that his body is trying to catch up with the sugar and vice versa, that he’s feeling hungry but that he’s o.k. and it’s o.k. to wait for his sandwich….and apple, and maybe a hot dog.

We check his blood sugar again, an hour later and he’s only 163. It’s a little out of his range but given that he’s had so many carbs I was surprised that his blood sugar wasn’t higher. I hold off dosing him, taking the chance that he would then go too high, making his blood sugar turn into a yo-yo, which in turn makes him miserable.

When he’s this low I wait to dose him, making sure he’s in range. There are all kinds of formula’s and charts to follow, but sometimes after you’ve followed the check-list and gone over it in your mind a hundred times, you have to go with your gut. You know your child, trust yourself.

As we wait for his numbers to settle in, I go over the numbers in my head. I double check the carbs to insulin ratio, the numbers add up, but they always add up, it’s all the other stuff that you can’t pin down.

As I try to figure out what could have made him go low he reminds me that he loves playing the Kinnect because he can get some exercise and have fun at the same time. Bingo.

He was playing the Kinnect before lunch, he was playing so hard that he was sweating. I’m guessing that his low was a result of the playing. (This is not the case for everyone, and not always the case for Logan either, sometimes exercise can make him go low, and sometimes depending on the activity and his adrenaline level it can make him go high).

Here we are an hour and half later, Logan runs down the stairs, “Mom, my legs feel better..” and he plops down on the floor humming as he goes back to work, creating another Lego masterpiece. Like it never happened.

When I go to download the photo of his meter, only to share in this post, I noticed that it’s “image100“, reminding me of my upcoming 100 mile ride. Ah, the irony.

Prior to Logan’s blood sugar going low I was thinking about how nice it would be to take a nap, skip my ride, just take a break. I was thinking about how nice it would be to be working right now, for  a lot of different reasons. Pay off my student loans before we have to pay for their college, this reason seems to top the list these days, I’m sure I’m not alone on this one.

Then this happened and my thoughts shifted. Grateful at times like this that I am here, with Logan and Zoe. Believe me, I do not take it for granted, or at least I hope I don’t. If I had a job that took me out of the home, we would make it work, just like all of the other working parents out there that are doing it, but until that day I hope that I appreciate that I am home.

I give thanks that Logan is safe, that this moment also gave Logan, Zoe and I to talk about our pact, that we are a team, that we need to help each other. We go through the drill, what to do if Logan is somewhere that we are not and what he needs to do and what Zoe can do to help. Making sure there is balance, we also talk about what Logan would do if she needed help.

I look at their sweet faces, Zoe excited that she remembers what to do and proud of herself as she adds some new ideas of how she can help, and then she throws in some ‘what if’ scenarios that are so bizarre I can only hope they never occur because I have no solutions for her.

As I wait for Logan’s numbers to go back up, as he pokes his finger for the 4th time in 40 minutes (two pokes that worked, and two more because of one faulty test strip and one finger poke where he declared his finger to be ’empty’ because he couldn’t get any blood out), as Zoe waits patiently, as her needs are set aside for the moment, I realize that this is not the moment to stop. I realize that I want to ride forever. One hundred miles, one thousand miles, one million miles…for a cure.

I make myself a deal, I’ll stay home, but no nap. I can nap later. Instead, I’ll ride on the trainer and set up the laptop so I can indulge in a movie on Netflix or get hooked on a T.V. Series and forget the clock.

I realize that there are days to stop, to rest, to take a break, and I appreciate them, but today T1D reminded me that it is fierce and that it never stops, it never gives Logan a break and it never lets us rest, so I’m not either. Not today. Today I realize that I am doing the right thing.

persevere

http://www2.jdrf.org/site/TR/Ride/JDRFNationalRides?px=2160337&pg=personal&fr_id=2244

Staying grounded, holding on, letting go. It’s all good.

IMG_2428Our humble attempt at a self portrait the day we brought Logan home after he was first diagnosed. Happy to have him home after three days and two long nights in the hospital.

What has always caught my eye about this photo, aside from Zoe’s puzzled look and the pure joy that we were feeling on that day, is how tightly I am holding on to Logan, never to let him go.

We were all squished together trying to get the shot, wanting to stay in that moment forever. Happy, safe and for a second forgetting how our life had just been turned inside out, upside down. How Logan’s life had changed…forever.

Thinking of that day and where we are now makes me catch my breath, but then I sit tight, remind myself to trust, and try not to hold on so tight.  Letting go is good, but geez it can be hard sometimes.

Even as I write this I am sidetracked by thoughts of them growing too quickly, picturing their tiny little hands slowly slipping out of mine as they grow and explore. Excited and scared at the same time. They are going to be awesome people, I’m so excited to see what they do, where they go…but wait, don’t grow so fast.

I am already picturing them in college, and I’m that mom, screaming after them, “Wait, I still haven’t finished your scrapbook from kindergarten!!” How the heck does it happen so fast?

My heart aches a little bit. Expanding I’m sure. Bursting with a love that I can’t seem to get out fast enough before they set off into the world. I just don’t want to miss one minute of it. Not one.

I take a deep breath, chanting to myself trust, trust, trust. It’s all good. It really is.

This D-life that we have come to know has brought us to so many amazing crossroads, and so many wonderful people. Today was a reminder of all that as I connected with new D-Mom’s, gave thanks to supporters in our community and frantically, and without coffee I might add, tried to nail down my final registration info. for the ride. I couldn’t help but think of how far we’ve come.

If you didn’t know this already, I’m starting to get both excited and nervous about it all. The ride that is. I’m vacillating between What was I thinking? and What was I thinking?

I was in a total panic this morning when I found out that my bike needs to be shipped one week prior to my event and I felt like I was sending them one of my children, who knew I would get so attached to my bike! The whole letting go and holding on seems to be a recurring theme today.

So in the mean time to help me stay focused I decided to use this time to share some facts about T1D. All of the information I will be sharing with you is provided by the JDRF and can be found at http://www.jdrf.org. (I have paraphrased some of it to keep it simple, but it can be found in it’s entirety on their website).

T1D- the basics:

Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas STOPS producing insulin. Insulin is a hormone that enables people to get energy from food.

The body’s immune system ATTACKS and DESTROYS the insulin-producing cells in the pancreas, called BETA-CELLS.

The causes of T1D are not entirely understood, though scientists believe that both genetic factors and environmental triggers are involved.

THE ONSET OF T1D HAS NOTHING TO DO WITH DIET OR LIFESTYLE, THERE IS NOTHING YOU CAN DO TO PREVENT T1D AND AT THE MOMENT, NOTHING YOU CAN DO TO GET RID OF IT.

That’s all for today, please stay tuned for more fast facts about T1D as I do my best to stay grounded and count down the days until I ride.

Thanks for stopping by, for sharing and for cheering us on! I can hear the cowbell already!

(And your homework for today is not to remember all the T1D facts but to grab the person or pet next to you, squish together, hold on tight, take a self portrait and treasure it…always).

http://www2.jdrf.org/site/TR/Ride/JDRFNationalRides?px=2160337&pg=personal&fr_id=2244

Friends, they’re a big deal.

I have been wanting to write this post since the day it happened and here I am months later finally putting it out there. I have been thinking about all of the amazing women that I know and how grateful I am to have them in my life. They are always teaching me about who I am, who I am not and who I am yet to be.

I have realized how important they have become since Logan’s diagnosis and how some friends have drifted away and how new ones have emerged. Everyone’s timing always perfect.

If I could, I would post a photo of each and everyone of you, all of the amazing women in my life that have supported me through the good, the bad and the ugly. There is just not enough space to do that so I’m choosing a more recent photo with new friends because it reminds me of what all of my friends have in common. Compassion, love and generosity.

I was a new addition to this dynamic duo of women, they had warmly welcomed me into their already well established friendship after we moved from Wisconsin to Colorado.

Image0522On this day we were headed out for a hike and I was excited to explore new territory. As we were approaching the mountain trail I realized that the bars on my phone were disappearing and without mention, they picked up on my anxiousness and Shana quickly said, “Oh, don’t worry, we can go somewhere else, you’ll need your phone for when the school calls with Logan’s numbers“.

I hesitated, hating to change our plans. I knew that neither of them would mind, but I didn’t want to be the reason for a change our plans. Well, actually I didn’t want T1D to be the reason for it. It was just another gentle reminder that T1D is ALWAYS there and I was struggling with it a little bit, feeling restricted, and feeling selfish at the same time.

We drove back down the mountain to a different spot, both of them telling me not to worry about it, that it was no big deal, but it was a big deal. It may seem like such a small thing, but in my mind all of these small things add up and make me feel so incredibly lucky to have people like these two women in my life. We all deserve friends like this and I trust that you have them.

Often times people say, ‘Really, it’s not a big deal‘ and make changes to help out. Friends do this for each other. But you must know that it is a big deal and it doesn’t go unnoticed. We are so grateful for all of the things that you do.

For example, all of the times that people have changed a meal time so we could work around Logan’s T1D schedule. Or when his teachers figure out a way to include a treat during a time that Logan would typically have  snack so that he doesn’t have to bring his treat home or get an extra injection.  Or when people ask questions about T1D and are genuinely curious about what it is and how they can better understand it. Or the many times that my friends cut me some slack when they know I’ve had a sleepless night. Or, or, or. The list is long, but these are all the ‘little’ things that are big things in our book and there are so many.

We could never ask that you make these changes because we understand that everyone has needs and that everything always works out. Believe me, we always manage. Well I take that back. If we know you well enough, we might ask you, and if you’ve been reading my blog you already know that sometimes T1D just plain ole’ sucks. So I’m not trying to say that life is all rainbows and sunshine, what I am saying is that it is all good. Really.

And the asking for help part, ugh. I am forever telling my children to ask for help, yet I am the worst, I find it quite difficult to ask. I mean really, who doesn’t?

So, we might not ask, and we will not expect, but what we will do is to be grateful for every token of kindness that you offer. We will also be inspired to offer that kindness to someone else and make sure that we are the one’s that tell them, “Really, it’s no big deal“.

For me, among many things, T1D challenges my natural instinct to be spontaneous. My forever desire to just pick up and go, just do it, right now. I’ve gotten much better about it and have helped Logan manage his own desires to be spontaneous, it just takes a lot of planning, and it helps to be surrounded by people that will come off of the mountain for you when you need phone service.

As we celebrate Mothers Day I would also like to celebrate friends. We all believe that our friends are the best friends and they are, aren’t they? May you continue to have a friend at your side and to be that friend for someone else.

Sending out love and gratitude to all of the friends that have been a part of my life, and for those I am yet to meet. An extra shout out to my Iola friends, you know who you are, a community of women that should be honored with their own post. There is a lot of magic happening in central Wisconsin.

A special thank you to the friends in Logan’s life that have been so special to him along the way and who have always been so supportive of his T1D care. Thank you for stopping for BG checks in the middle of some serious play time, for not sharing food after your parents did everything in their power to teach you to share, and for understanding how unpredictable T1D can be, you guys are troopers. Hugs to Maddy, Lilly, Maddie, Nina and Tobin, thank you, I know that Logan misses your company.  (I am sure to have forgotten a few and I know that Logan would have more to add to this list if he were here to join in the conversation).

It’s all good, but some days it just feels good to say “it sucks” out loud.

It has been way too long since I’ve posted here. I’ve written one too many posts in my head that never made it here. Racing thoughts, good ideas, great learning moments…just not enough hours in the day.

So I’m a little surprised that I’ve carved out this time today but I was prompted to write after reading a post by Moira McCarthy Stanford. It just stirred something in me, in a way that was unexpected.

As Logan approaches his birthday and we move into double digits all I can think about is how his body will change, how hormones will come into play and how I’m doing my best not to think about the challenges we will face with his T1D care. I’m also thinking, “We’ve got this, but some days it just sucks”.

I struggle sometimes to even consider venting about our life with T1D as I have too many friends that grieve the loss of their children because of cancer. As I type this I’m thinking of a friend who is praying that her daughter doesn’t have any seizures today while having her wisdom teeth removed. A life with epilepsy.

I am also thinking of a friend that prays every second of the day that they will get the ‘call’ and that her daughter will get a new heart. A life filled with hope and prayer, that someone’s loss will give life, a life filled with gratitude and grace.

Many of us walk this path together, sharing fears, praying for cures, finding balance. So if I encourage my friends to express how they feel, to move through it, even when it’s uncomfortable, to say it out loud and know that it doesn’t define them, then I need to allow myself that same space and opportunity.

Of course I feel blessed that we are given tools and medications that can help us manage Logan’s T1D, but it is not to be forgotten that it is not a cure and a cure is what we really need.

I can only hope that everyone has someone in their life that they connect with, someone that they can just let it all out and say “You know what, this really sucks, I hate it” and not feel judged or looked upon as if they are losing ground or focus. Sometimes you just need to say it out loud, and I hope you do. It feels pretty good when the timing is right.

We all have our days, whatever our challenges but today I realized, in a different way, that I am connected to a world that too many of us know. The world of Type 1 Diabetes. I read Moira’s post, http://despitediabetes.com/the-truth-the-one-were-i-say-suckity-suck-suck-more-than-once/#comment-18456,  a D-Mom warrior in the highest regards, and it made me laugh, cry and cry a little bit more. Albeit I’m pms-ing, hopped up on Easter candy, considering a third cup of coffee and home bound with a very bummed out daughter that was sick for her entire Spring break and is home again today.

Even without the perfect storm this post would have made me cry. It hit home. It knocked at my back door when I was expecting a knock at the front door.
DSCN2333We do our best to teach Logan to move on, not to get stuck in ‘it’, that he can handle this, we can handle it, he can do anything he wants to, and he can, he will and we will. I have no doubt about it.

I know that we are somewhat on the right path as he recently described his life with T1D as “happy”. I kid you not, “happy”. I of course had a few choice words, but when he was asked to participate in a JDRF event, they asked him to give them one word that describes his life with T1D and he said “happy”.

I love him. I love that he feels this way, that even on the hard days he feels “happy”. But I must admit, sometimes it feels like we are putting on a play, getting applause for a job well done and then going behind the curtain, celebrating, exhausted but thrilled that we pulled it off and quietly wishing that the audience could see everything that took place in order to orchestrate this “play” we call a day in the life with diabetes.

I agree with Moira, T1D does suck, it can be managed, but it’s nothing like a cure…and I have to agree with her friend, I think on any given day the color of your underwear will have some affect on your numbers. Heck, when Logan’s hair stands straight up I think “Oh great, his numbers will be off today”, that’s how unpredictable and fickle it can be.

So thank you Moira, and thank you readers, for sitting with me in this moment and giving me some space to say “it sucks”, without judgement, without pity…just some breathing room to say it out loud.

Now, back to business, one sick kiddo at home, and a call from the health room letting me know that my D-child is not feeling well. So we move on, we are strong, we are positive, we are confident and we are almost out of Easter candy.

We care and that’s why we are vulnerable. Sometimes we just need to vent so we can remember why we are so determined and committed to this path to find a cure, not only for T1D, but for all, because we all have days like this, we all cry, scream and yell ‘It suck’s’ and regardless of our challenges, we are in this together.