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Details. Lots of ‘em

April 21, 2020

**crickets**

Well, it sure has been a while. I’m not quite sure why I stopped, but the thing that comes to mind every time I start to write is “does this matter when others can’t even afford insulin?” And I’ve realized there is no good answer. To some people it’ll be yes, others no, and others don’t realize just how bad it is for others. Anyway, that’s actually not what this is about, just where my brain has been.

At the very beginning of last summer, I might have made a huge mistake which ended with a shattered ankle. Cousin’s wedding + tequila = broken ankle. Yes, it was a damn good time, but man did it ruin my summer. But I’m here to talk to you about the paperwork and additional requirements needed for surgery because of diabetes.

  • I broke my ankle Saturday night and was basically trying to will it to not be broken. I knew it was when I tried to walk on Sunday and could feel pieces moving in my foot.
  • I was in NH, and was able to get an X-ray through my dad’s medical friends (yes, I am VERY lucky).
  • When the PA came back in the room to tell me the results of the X-Ray, he asked if there were any medical conditions that they should know about? I mentioned Type 1 diabetes and he and the student looked up surprisingly because they were not expecting that answer.
Yes, the shirt I was wearing the day of the X-ray does say “I run on insulin and skiing”
  • The surgeon briefly came into the room to discuss surgery with me. I was not supposed to eat for “x” hours beforehand. I asked what to do if my blood sugar went low the morning of surgery. (I had the first surgery of the day). He told me not to go low. I repeated, a little louder, “what can I eat if I go low before surgery?” He finally informed me clear liquids. (I did not go low before surgery.)
  • I was informed that I also needed an EKG in order for them to perform the surgery due to diabetes. That was scheduled for the next day.
  • Every appointment came with a new phone call to my PCP and endocrinologist’s office for paperwork. My endocrinologist had left the week before so “no one knows you” was a response I got a lot.
  • The surgeon also required an insulin plan in order to perform the surgery. (At this point let’s remember that I am not my typical optimistic, understanding self and I’ve switched to sass.) I responded “just don’t touch my insulin pump; it does all the work”
  • When I talked to a nurse from Joslin who was writing out my plan, she seemed just as frustrated with me as to why they needed it. “Don’t they know that people without diabetes have insulin during surgery too?”
  • Being out of state caused even more problems. Someone in NH replied at one point, “this is coming from MA, ugh” At this point I lost it and said, “this is literally your job.”
  • Having run out of Dexcom supplies the week before was actually a good thing since all the drugs had acetaminophen in them.
  • I show up for surgery and they get me settled in a room and the intake nurse says, “it’s so good you don’t have diabetes.” My eyes went wide and I became more awake than ever before at that time and said “I’ve had type one diabetes for 30 years and I’m proud of it and it’s in my chart and it is NOT a problem.” She read the details of my chart more intensely after that.
Post surgery, giant cast and blood circulator to prevent clots

Other things that were happening at the time:

  • I was on vacation from work that week, so I didn’t have to miss any work that week. (I did end up missing 5 or 6 weeks of work though).
  • My grandmother, who had not been doing well, passed away the day of my EKG and luckily I didn’t know beforehand.
  • I woke from surgery sobbing because I was so sad about my grandmother. Luckily the nurse with me then told everyone else who came in the room.
  • I had the giant gauze cast for one week, a hard cast for four weeks and a walking boot (non weight bearing) for one week.
  • The body really does a good job of focusing on healing the broken pieces. Therefore I had zero energy for a long time.
  • I chose to have the surgery and recovery in NH, because I didn’t think I’d be able to recover and be mobile in my second story Boston apartment. This turned out to be a wonderful decision because even hygiene routines like showers were very difficult and I needed help for a lot longer than I anticipated.
On my way to my grandmother’s wake
The hard cast
This knee scooter and mom’s bike basket changed my mobility immensely.
I was able to walk down the aisles for my friend’s and cousin’s weddings unassisted, but still needed these crutches.

Looks Can be Deceiving

September 10, 2018

I’ll be going back to the endo next month and if I keep days like this up, my results on paper will look REALLY good.

Here are some thoughts that occur with such a flat line:

  • Do I have enough low treatments?
  • Will I crash?
  • When am I going to crash?
  • Where will I be when I crash?
  • Will I ruin this beauty if I eat?
  • What can I eat AND not ruin this beauty?
  • Am I planning on doing any sort of exercise/movement soon?
  • Do I have fruit around if I want to exercise?
  • Can I reach my low treatments if I go low?
  • Am I driving somewhere where I’d have the chance to safely pull over if I go low?
  • How can I tell the difference between a “leave this” 70 and a “treat this” 70?
  • Am I going anywhere where I want to bring a small bag? Goddamn I hate when I need snacks and a small bag.
  • Am I checking my watch too much?
  • Damn it feels good to feel this good.
  • It takes so much work to feel this good.
  • It shouldn’t take this much work to feel this good.

Time

August 22, 2018

Time, it’s a crazy thing. I realized that I can use it to my advantage though. Hear me out.

I have been working so freaking hard at lowering my A1C since April 2017 (fucking fuckity eye dilation/complication day). Something wasn’t working though. I was bouncing.

So I started pre-bolusing. Now, I’ve attempted this in the past and I almost never remembered to eat, or would just get too hungry/impatient. But I have not-diabetes tools that make life with diabetes MUCH easier!

See in the left bottom corner how there’s a little timer? Well, every time I bolus I open that up and hit the 10 minute choice. If it’s a high carb and/or fat meal, I’ll do 15 minutes. Now, it’s not perfect, but it has brought my post meal spikes way down. Sometimes I have things to do and I don’t even realize the time has passed. Sometimes I forget to pre-bolus so I sit with my food in front of me for 10 minutes. Sometimes I’m so hungry and so impatient that I pace in the kitchen waiting for the timer to go off. It is not an easy thing to pre bolus. It’s actually kinda really incredibly frustrating. But at this point it’s a habit for me and I’m so excited with the more level lines.

The other, almost more important, thing I’ve been doing is setting a timer for a BG correction bolus. See, when Christel shared Joslin’s link about stacking insulin on Facebook way back in April I read it. And I thought, I need to pay attention to that shit! I started with a correction bolus and then opened my handy alarm on my phone. I set it for three hours from the time I bolused. Basically, I told myself I was not allowed to take BG insulin until that thing had gone off. It was a difficult thing to do at first. I would watch my Dexcom line, especially as it went higher than my high alert line. It seriously took all the self control I had to not give myself more insulin. But then something started to happen; the up arrow would switch to flat and then to down and I am almost always back in target range when I’m ready to correct again. (Assuming all other ratios are correct, which they are not always.) Since I started doing this in April, there has been ONE time where I ignored the alarm and that’s when I had to change a kinked site.

My ridiculous lows started to lessen. I still had a few though, and the active insulin on my pump has a four hour time frame, so the alarm now gets set for 3 hours, 15 minutes from the time I corrected.

These days, lows tend to come more from exercise or longer walks than normal than from anything else. These might not be prescribed tools, but I honestly could not have flattened my lines without them.

Breakfast

May 9, 2018

One of the things that I have been working on the past year is bringing my A1C down. Now I’m totally in the camp of “your A1C is not the only thing that determines how well your brain is doing being a pancreas.” However, a year ago it was over 12 and that was NOT GOOD. I was not surprised; I knew why and it was the eye opening moment I needed to kick myself into gear. At the beginning of March, I found out that in 11 months my A1C has dropped to 7.9. I was ecstatic! I just KNEW that the next month would bring better news!

Except that it didn’t. My doctor said “you see here…” NO! MY EYES ARE FUCKING DILATED AND FILLED WITH TEARS I CANNOT SEE A THING. “…there are more hemorrhages, especially in your periphery. I want to monitor this and have you come back in six months.”

I know that this is not on me. I have had diabetes for nearly 30 years. However, that doesn’t mean it still doesn’t suck because it is my body and I only get one and damnit I’d still like it to be perfect. But what on earth could I do to make a difference?!

I wanted to start by alleviating the roller coasters. That was my goal. I figured that even if the line was a little higher than my goal, but straighter, it might be better on my body. At least in the beginning. Okay, I have the what. But HOW?! How can I do this and more importantly: how can I do it without burning out?

A friend posted pictures of her Dexcom graph while doing a Whole 30 month and it was seriously impressive. I read the Whole 30 description and was just like “nope nope nope.” I’ll burn out so fast. But those graphs!

Instead, I decided to do Whole 30 breakfasts (with the exception of my coffee). Something you should know about me is that I will choose a sweet breakfast over a savory one 95% of the time. So this has been interesting on my taste buds for sure. (All links to recipes included in the pictures.) Another thing to remember is that I am single with fridge space to make the full recipe then reheat each morning. I know that would not be possible for everyone.

This one called for patties and poached eggs. As much as I like to cook, poached eggs scare me. I love them, I’ve just never attempted them, so I made hard boiled eggs. I also made a mixture of sweet & regular potatoes. It ended up more like hash and was delicious. I went low a LOT this week because I was not used to the low carb/high protein breakfasts. I used to bolus for 30-45g each day for breakfast. I now bolus 12-15g each morning.

So far, this one is by far my favorite! See previous sentence about how I like sweet breakfasts. I also cooked a package of bacon this week and would have a piece of bacon each morning.

That comment that I posted on the photo for my Instagram story is WHY I am doing this. Yes, it is hard, but it is so so worth it to me right now. I know there’s going to be days when I do not want to put in this effort, but I’m trying to hold myself to doing this at least six days per week. And, without changing any of my other habits, bolusing during the rest of the day has also become much more effective. For me, this is a huge change, so I can only imagine what a true Whole 30 is like, but it makes me feel so much better. Don’t get me wrong, this takes a LOT of planning & prep work and time. But I’m also happy with the results.

I was Home

March 13, 2018

I took the day off from work and figured out how my “I hate driving more than 3 hours by myself” self was going to make it 5 hours to camp. No matter what, it was going to be worth it. I was going to see my friend, and make new ones and hopefully find something to inspire me again.

  • Bullets. My heart is so full that it’s just one giant, happy run-on sentence in my head.
  • I had never been here before, but I was home.
  • It was interesting being in a group where I was one of the people who has had diabetes for the least amount of time.
  • It was so good to see a friend I hadn’t seen in 3 years.
  • It’s been so long since I had been surrounded by a diabetes community.
  • Diabetes camp, no matter which one, gives life to so many people and friendships.
  • Sitting in a field, skipping a session and just talking about life with diabetes may have been one of my favorite moments.
  • The Diabetes (De)stress session made me realize just how lucky I am to have access to diabetes therapy.

I can’t stop reading this page from my Diabetes (De)stress session at camp this weekend. So many meanings and so many feelings. ❤️

  • I danced for exercise and for me in a room full of people.
  • I hadn’t done yoga in a year, and it felt good to do it. And then again.
  • I learned so many new tips. Some I have already implemented in my life, and some are not practical for me, and some seem overwhelming. I wrote the overwhelming ones down, and maybe someday they won’t feel that way.

Bonfire with diabuddies new & old

I started writing this post in June 2017, and has always felt unfinished. I’m going to try to wrap it up finally! In one session with Daniele, she mentioned making a list for every day. I think I’m on my third notebook since last spring, and I have become overall much more productive. It seems SO simple. But it absolutely works for me.

The reason I am FINALLY finishing this is because I’m signed up to go again this summer and I would love to have you join me! There will be hugs and smiles and tears and knowledge growth and laughs. All sorts of laughs. There will be photos that can never truly capture just how wonderful this weekend is. Come join me and see what kind of magic a weekend of adult diabetes camp can bring to your life!

A Thumb as an Accessory

December 15, 2017

Kerri suggested posting about things NOT diabetes. So here we go.

I’ve written about it before, but I love playing in social leagues. I find it to be the perfect amount of competitiveness combined with a lot of laughter. The one I’ve been a part of for the longest time is inner tube water polo.

Unfortunately I got injured this season. I was spun into the wall by an opposing player and my thumb bent backwards. I jumped out of the pool, iced and realized it wasn’t going to get better on it’s own. I’ve still been going to the games and being the best cheerleader I can be. I’ve also been to urgent care, a hand surgeon in orthopedics and a hand therapist (all firsts for me!). I’m two weeks out from the injury, and the pain has decreased, but the ability to do things has not increased. It’s absolutely infuriating. Things like cutting foods, turning a faucet, getting dressed, shoveling or holding anything and washing my hair are incredibly difficult or impossible.

I have been an absolute grump. It’s very frustrating not being able to do simple tasks for yourself. If someone offers to help while I’m capable, it’s one thing, but to NEED help and have to ask. It’s driving me crazy. Luckily people have been very helpful. People have cut my veggies that I need for cooking, wrapped presents for me, shoveled, helped me get mittens on and offered so much more. I’ve spent some of my time at the bar after the games trying to figure out who lives close to me and who’ll be willing to shovel me out. That is what I’m most nervous about. Luckily, these are wonderful people who have said that I can call on them. It’s one of the main reasons ITWP is so wonderful.

And, if you see me on the mountain in the near future, I’m going to look like this with one mitten and one pole.

Roller Coaster Hell

November 13, 2017

Last week was hell. I couldn’t focus. Everything was pissing me off. It was absolutely terrible. The smallest things annoyed me. I did my absolute best not to bring it to work, but everyone else saw the worst of me. I couldn’t figure it out, because nothing was a huge problem.

It wasn’t until Wednesday night diabetes hell that I realized the big frustration was diabetes, and it made it harder for me to deal with the little problems.

I looked at my roommate during the middle of this and whimpered, “I’m scared.” I haven’t been that scared in a long time. Then over the next 24 hours I kept sending screenshots to friends completely frustrated with diabetes. I had so much sugar: ice cream, cider, applesauce, smarties, skittles and probably even more.

Then a friend, who I often forget is not just a friend, and not just a friend with diabetes, but a diabetes educator asked, “would you mind if I logged in to your clarity app?” First I had to figure out what on earth they were talking about, and then I begged. They gave me a LOT of numbers and times to change and I was a little nervous. I still only like to change one thing at a time. But, because this is a friend and not someone on my medical team, I can reach out at any time. So I made the changes. They also suggested we review the changes on Sunday.

I went from this:

To this:

It certainly is not perfect. But it is so much better than it was just a few days ago. I feel like I can handle a few more troubles this week and stay calm in the process.

*As part of the diabetes community, we all reach out to friends. However, my advice to you is to consult your medical team for major changes, not your friends.*

Holding On

August 9, 2017

The first diabetes memory I have with her is when I asked her to fix my tubing in my bathing suit at an inner tube water polo game. I barely knew anyone, but she was a nurse so she was the person I wanted to ask. It’s always been comfortable like that. 

A few weeks ago a bunch of my water polo friends and I went to Maine for a floating & drinking shenanigans weekend. It was fun; it was a mess; it was everything you’d expect during a weekend of shenanigans. I was woken up in the middle of Saturday night and I was not happy. But there was my nurse friend saying, “hey sweetie, you’re probably just asleep but I want to check your sugar.” We did, and it was high (not surprising), and then I went back to sleep. 

Last night we got dinner and were talking about it. She still remembers exactly what my BG was. It’s not every day that a friend comes along that I would completely hand over diabetes control to. But she’s one of them. Thank you for all the help you’ve always given me! 

Now if only I could convince you to move back to the northeast for good!

What About How I Feel?  

May 18, 2017



“Today let’s revist a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)”

Oh, mental health. IT’S SO IMPORTANT! 

Did you get that? If not, go back and re-read it until you do. And if you’re thinking it’s hard to deal with, or confront, you’re right. It’s so hard. But it’s worth it. You can read pieces of my journey here and here and here and here. There is so much more to my journey than those four posts, but not everything needs to be on the internet! (If you have questions, please don’t hesitate to email me!) 

I have it better than most. I have access to an endocrinologist I love, I have a whole building full of diabetes related specialists and a therapist who makes me feel smiley. I have a roommate who is studying to be a therapist who I can discuss and breakdown my therapy sessions with. And who lets me vent, as much as I need because therapy is expensive and I can’t go as often as I’d like. She is not my therapist, but after a while normal interactions take on therapy – styled responses. I’m the same way with children, because of my degree, so I completely get it. 

I got a letter that told me therapist is retiring this summer. I recently lost another health care provider for different reasons, and the letter came a week later. It was like a punch to the gut. Or face. Or heart. Take your pick, it doesn’t matter, because no matter what you choose, the end result is that I’m devastated. (Hellooooooo run on sentence.) I know I have time to see him one more time. And I know he’ll set me up with a new therapist who he believes will be just as wonderful. But for me, it won’t. This new person will have my chart and they will see that I am improving. 

But for me: 

  • Where is the comfort? 
  • Where is the familiarity? 
  • Where are the tiny nuances that develop in any relationship that don’t go in a chart? What about those? 
  • What if I’m not comfortable with any of the replacements? 
  • Where do I go if the replacements at Joslin aren’t a good fit for me? 
  • What if it feels like throwing money away and it’s not even helping? 
  • Why does it always feel like I am starting over? 
  • What about me? 

For more mental health posts from the diabetes community, check them out here

Still Affected

May 17, 2017



“Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like
you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us! (Thank you, Brian, for inspiring this topic.)”

I remember this distinctly, and I remember how I wanted to respond. 

I played four years of college tennis, and occasionally I’d go low. I was the only teammate allowed to bring regular Gatorade on the court, plus tabs, juice boxes, granola bars and of course, water. Sometimes, I’d have a match that was 45 minutes, and other times I’d have matches that were over 2.5 hours. Luckily, this is what an insulin pump and temp basals were for. But one year, I just kept going low ALL THE TIME. It was incredibly frustrating. I don’t remember if it was at the end of the meet or right before one, but someone said to me, “you’ve been dealing with lows for years now; they shouldn’t still affect your play!” They were very serious and I was shocked. If I hadn’t been so quiet and meek, this is what I wanted to say. “Just because someone is an alcoholic, doesn’t mean you encourage them to drive while drinking.” 

Ten years later, and I hope I would have the courage to say what I wanted. It doesn’t matter how many lows I have, my body still shakes and sweats and gets weak. Just because time passes doesn’t mean I function any better. I believe I’m better equipped to deal with lows now, because I am more knowledgeable, and more interested. But I still hate it when lows interrupt my life, especially my team life. I am a more involved patient than I was then. I am more able and willing to notice and look for patterns and to reach out to say “what am I missing?!” 

I do not know what they could have said to make me feel empowered at that time, because I was so frustrated and embarrassed by my lows. Head here for more puppets!