I was waiting for my train and dreaming of pancakes.
I was eager to get to my destination and needing insulin for my coffee and muffin. I should’ve eaten before I left the house, but I didn’t have any breakfast food in the apartment. I needed my insulin, but didn’t know when my train would start loading and didn’t feel like figuring out where the bathroom was with all of my stuff. I looked to both sides and the man on my left was in clothes with a layer of dirt radiating from them. I looked to my right and there was a woman in a perfectly planned Wimbledon outfit with accessories to match. I needed to figure out who would react less to my taking my insulin. I chose the right side.
As I took out the Humalog pen, I noticed the side eye I was being given. I was ready to say I was taking medicine for type 1 diabetes. I just hadn’t decided if I would say I’ve had it for 26 or 27 years yet since my anniversary was still two days away. I figured out how much I was going to eat, and guesstimated how much Humalog I would need for it. I primed my needle and got ready to take my shot. Wimbledon lady was big eyed by this point and staring at me. I hiked my shorts up just a bit to find the best part of my leg. She jumped up and to the other side of her bags. She stood there staring at me for quite a while. As I was done she walked away, but never too far away. After all, she needed to keep tabs on the suspicious lady taking a shot in the train station!
I sent this picture to a bunch of people because I found it absolutely hysterical. Some laughed along with me, some were confused and some were upset. I loved all of these reactions because they all come from the mind set that taking a shot of insulin is just like taking a sip of water.
I think this may be my last “I need to write about every appointment” blog post. The appointments will still happen, but as there are less new doctors, the appointments become more privately medical, discussing things I may not want to share here. This is not to say I will never write about an appointment ever again. If you ever have any questions about my mental health & diabetes journey, please don’t hesitate to ask! You can follow my mental health journey here and here.
It was one of those days where everything had been prepared the night before, but when you wake up 5 minutes before you’re supposed to leave, it’s hard to feel like you have a grip on your day. But I was excited and intrigued for this new diabetes therapist, so we kept the changed schedule and off I went to Joslin.
- Due to the recommendation based on his work with the college transition group, I assumed he would be young. He’s not.
- He asked why I was there. I didn’t know.
- We briefly talked about when I had seen the previous therapist and updates on her notes. He mentioned her name with respect, so I left it at, “we were not a good fit.”
- We talked about how I’m feeling with the Dexcom again.
- He told me stats on how many times people with diabetes think about diabetes per day. No wonder we all get burned out from time to time.
- We talked about what my burnout symptoms are. And am I completely out? (No.)
- He asked what I think the biggest upcoming challenge will be with diabetes. This was a question that I have never been asked before, but hopefully will lessen the burnout if I am pre-aware.
- We talked about how I am in the most at-risk group of people with diabetes because I am on this journey alone. I do all the care, all the thinking and everything by myself. It doesn’t feel like that to me because I have wonderful friends & family both with and without diabetes who are supportive. But this is a journey I mostly take by myself. (This is when I almost needed the tissue box.) I had never looked at it this way before, and it’s intimidating.
- We discussed how no matter what, diabetes is a roller coaster. But we want it to look like a kiddie ride rather than a Six Flags one and he giggled at me. And nodded in agreement.
All of a sudden an hour had gone by and it was time for me to leave. In a few days I’ll be scheduling more appointments with him, but we need to check a few other appointments first. I feel so much better than the first time I saw a diabetes therapist, but I’m not out of the woods. I’m so glad people reached out to me to say, “That therapist doesn’t seem like the right fit for you. Have you thought about trying to find another?” I probably wouldn’t feel as good, helped and supported as I do today without you.
It was a wonderful vacation with a lot of lovely sites and views and even better people. The last day of vacation was a half day and I was picking the family up from the airport.
I quickly looked through my mail and noticed this envelope that didn’t look like any others I typically get from Joslin. “Blah blah blah it’s been great working with you; Dr.A is leaving the practice blah blah blah.” I went from vacation mode to teary, sit on my bed and sob mode. I may have only known her for 5 months, but she brought me out of my worst diabetes year. I’m so sad that I’m going through this again.
I remember how scared I was to meet her. I remember ALL the tears I’ve shed with her. I remember her desire to help. I remember her praise for baby steps. I remember her team approach. I remember how she almost literally held my hand to introduce me to other people within Joslin who would & could & have helped me.
This time it felt personal. At that first appointment she told me she wasn’t planning on leaving for years and years. I remember thinking there was no way she could guarantee that, but I still loved that I found someone I could stay with. We were in the process of fighting (for the third time) for Dexcom approval. The office in Joslin (Neighborhood Diabetes) had contacted me to keep me updated, but I was also supposed to get letters from my insurance. Those letters never came. I frantically emailed Dr. A. “Where do we stand on the Dexcom approval?” It seems as though they were using every excuse not to approve this technology, so a new doctor felt like the perfect reason to deny it one more time. Imagine my surprise when she gave me my approval number and that it was shipping out on her last day. I was so relieved and giddy.
In case you are reading this:
- Thank you for bringing me out of burnout.
- Thank you for listening.
- Thank you for fighting for me.
- Thank you for believing in me.
- Just. Thank you.
One of my favorite parts of past Diabetes Blog Weeks has been sharing posts from others that I found powerful, heart-felt, and full of so many more emotions. Even though it’s not a topic this year, I decided to still make a link list because these posts deserve to be read. (They all deserve to be read, and commented on.) But if you’re reading my blog, these are the ones that stick out to me for my personal life. Enjoy!
I’m sorry it is now June, but I’ve been trying to read as many posts as possible before publishing. I know I’ve missed some, but please forgive me!
Luckily Diabulimia is not a complication I have had to deal with, but a resource like this is a great one to have out there.
We all come to this space because of diabetes, and I’m so glad she’s such an honest writer.
Words matter and how we speak could be creating a divide in our community without even realizing it.
Apparently Georgie and I feel the same way about the word diabetic. And compliance.
Leave it to Kerri to be the first one to make me cry. On the train. Without tissues.
I am also glad that this community writes, and that there are more than just fear-filled messages for us online.
I was at the bar with a few friends and a bunch of acquaintances. We were talking about favorite bars throughout the city and the beers they offer. A few are members of specific mug clubs where drinking all the beers the bar has must be done in a certain period of time (these happened to be 6 months to one year). I piped into the conversation at this point with the thought of “I could never do that.” One person said something along the lines of it being because of diabetes. My friend’s eyes widened with an “oh shit; what is she going to say” look. I quickly responded with, “I can drink as much as I want and I’ve definitely been too drunk before (at which point the friend with the wide eyes started laughing-he’s seen those nights), I just don’t like beer enough.” I don’t think he believed me, but with each misconception I correct, maybe someday he will have a lot more correct information about what life with diabetes is really like.
I was on a date. He was smooth and knew all the right things to say. My hands were on the table & he noticed my Fitbit and asked about the bracelet on the other hand. I had not mentally prepared to bring diabetes up just yet. But I also don’t want to actively hide it. I told him it was a medic alert bracelet for type 1 diabetes. He asked how long I had it, if it limited me in any way, and if going out for drinks was appropriate. The way in which he asked all these questions was with curiosity and not judgement. I happily answered, and also happily never saw him again.
As part of climbing out of burnout, there are days when I don’t want to talk about diabetes and separate days when it is all I can focus on. Not only is my diabetes a roller coaster, but so is the amount of attention I give it. I still find it amazing how my diabetes friends, who do not know the ins and outs of the rest of my life, know me. Know the perfect thing to say.
It is just a part of you. It is a part of you like your smile, or like your laugh. Simple. It’s there and it isn’t going away and it is endearing.
Managing diabetes during exercise can be tricky, so share what works for you or your loved one with diabetes and maybe it can help someone else. What to do when you want to work out, but your blood sugar is lower or higher than you want? How do you cope with this? Or how do you manage gym days at school for your child with diabetes? How do you stay motivated to work out? Or how do you encourage your loved one with diabetes to get active? What is your favorite kind of exercise – conventional or non-conventional? (Let’s see how many types of exercise we can find!
Let’s start with my favorites. Skiing. Tennis. Inner tube water polo. Skiing I’ve been doing longer than I’ve had diabetes and I started playing tennis just one year after I was diagnosed. Swimming I’ve been doing since I was an infant (thanks for getting Dad and me out of the house, Mom). I would also say that ITWP is one of my favorites because of the social aspect, more than the exercise aspect. However, it takes a lot of planning. (I honestly don’t remember what I did this past ski season and I’ve only played tennis twice since starting Levemir.)
So here I am focusing on the one really weird, totally random type of exercise. When I first started Levemir, I texted some of my friends. Even though it was still insulin, it was new insulin and it made me very nervous of the unknown. That first night I was fine. And again. And again. But then there was a night I fell 400 points in an hour and I was terrified. I sat on the edge of the pool watching my team. Wanting so badly to help. I realized that the food in my body wasn’t staying long enough. I needed a protein solution. I found these while walking through Whole Foods one day. I have one about an hour before my game. They haven’t prevented all lows, but the lows have been less severe. That counts as a win in my book. When I do go low, I have Airheads in my bag. They are very easy to open and each one is 15g. Most I’m, I haven’t gotten sick of them yet.
Other things I like: spinning, walking, running, all sorts of work games (frisbee, football, baseball, basketball – I’m terrible, tag, etc), yoga and I just signed up for a kickboxing gym. I know exercise is so important in keeping diabetes in line, but mostly keeping my whole body healthy. But I get very bored, very easily. I look for gym deals on discount sites. It helps keep me interested and moving. Which is the goal after all.
Thanks for reading my wildcard. Here are more!
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)
It’s a process I’m working through, with the help of so many people and doctors. But I suppose I’ve been working on it for a long time, just not with Joslin’s help. I don’t know if I have any tips or tricks yet, but someday I will. So I decided to reach out to some people in my life and ask two questions, along with sending the prompt.
- Have you ever noticed me to be stronger or weaker because of diabetes?
- Has my diabetes ever caused concern for you?
I wasn’t sure what kind of responses I would get, but to me, mental health & diabetes & strength have always gone together. There are friends I’ve pulled aside to ask if my diabetes and sharing the very negative aspects has been a burden. Luckily, they think I’m crazy for thinking that is a possibility. But I wanted to know more. I am so happy and impressed by my family and friends and so grateful for their help.
I think that your diabetes makes you stronger. You are more aware of yourself and you don’t let it stop you from doing what you want to do but you are prepared for whatever may come your way as a result. You don’t look for sympathy or expect people to treat you any differently. It is a part of who you are and you run with it 🙂
You are definitely stronger because of diabetes. Your basic nature is quiet and shy. I don’t think you would have the backbone/gumption you now have, if not for diabetes. We always were open about your care, so when we were not around, you had to step up. For a painfully shy young girl, that was a lot, and you did it.
You have never been weak.
Diabetes has always been a concern for me, and always will be. As you know, in every aspect, I speak up. I am proud to be your mom, and not afraid to push you, regarding diabetes, school, life in general.
Diabetes is tough. But remember, it is the best and worst thing that has happened to you. Great friends in and out of the diabetes community. Only those people willing to learn and help if need be, are your friends. Not a slug among them!
Great teachers. Again, always willing to learn. Your school nurse came to your insulin pump classes with us! Amazing.
Your schedule kept all kids happy, full bellies!
Remember, all of us, life is for LIVING. Diabetes can not be ignored or fought. When you take care of it, anything is possible.
And most of all, daddy and I wish we had it, instead of you.
What I love about your approach to diabetes is that it is always included. When you are dating, diabetes is your litmus test. How the date reacts to your diabetes is a way that you have learned to gauge him as a person. I admire that about you and I see it as a way you make diabetes work for you.
I have seen you be weaker by it, only when you’re low and have to get out of the pool.
Yes, [I was concerned] that time that you called me and needed some ice cream, I honestly was a bit nervous but very happy to help and especially happy it was an easy fix!
I have most certainly noticed you to be stronger! I learned so much about how you need to be in tune with your body and how strong a person you are… how you need to say no to things you want to do sometimes to keep your physical strength… how you need to constantly be monitoring what’s happening with your body… and how damned good you are at calculating a million different things having to do with carbs and blood sugar that still seem like an entirely different language to me. Not only the physical strength, but the mental strength to do all of these things day in and day out. You never get a day off, and I can’t imagine what a mental challenge that is – yet you don’t just deal with it and slog along… you crush it. You are an active, optimistic, thriving person who also happens to have diabetes
There are so many aspects to this side of diabetes. Here are more.
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!
- I understand getting to an appointment 15 minutes early to check in. Just because you can’t stay on time, doesn’t mean I should be required to get there any earlier than that.
- If you are 30+ minutes late, your office support staff should NOT get upset with me for wanting to walk out. My time is valuable too.
- I am a whole person, not just diabetes. Diabetes effects all those other parts too and I need you to understand that.
- When you send me paperwork, use laymen terms. Or at least put a key in so I actually know what you’re saying.
- I need my insurance to listen to my doctor and my doctor alone.
- I need a cost-effective way to get to all the appointments I need.
For most of my life, I have had very positive healthcare experiences and I am very grateful. When I read the prompt, these are the first things that came to mind. If you’re wondering how others want to make their healthcare experience better, go here.