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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! 

Not Going in the Hole

May 16, 2017

“Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care? (This topic was inspired by suggestions from Rick and Jen.)”

There are going to be people who read this and finish it thinking, “do you know how lucky you are?” The answer is yes; I definitely do. 

If you’re here, you’re probably familiar with the unhappy medical patients in America. You might think this post will focus on this and show my gratitude to these people, but I’m staying more personal. Call me crazy, but health just shouldn’t bankrupt a person. Here’s my story: (and also a very difficult one for me to write because I have kept this information very close to me.)

Last Spring, my car died. It was one of those days where I couldn’t deal with it. I didn’t even have a local garage. The effort to even figure out this information was overwhelming. I started with my budget. In order: Rent, Utilities, Health Insurance, Dental Insurance, Medicine, Cell Phone, Food, Transportation, Car Insurance, Food, Savings & Fun. I realized how much I had left over at the end of the month and it was scraps. How could I have a Bachelors Degree and a full time job and barely make ends meet? 

I looked at it and was wondering if there was a way to “catch up.” What part of my budget could I take some money out of? My car was safely in my driveway, so I cancelled my insurance and started taking the train to work every day. People started asking when I’d get it fixed. I told people a part was getting ordered, or that I was enjoying walking everywhere, or any sort of other response to deflect from the real reason. Even though I was not paying car insurance, I still could not catch up. I just kept going though. Eventually I’d get enough tucked away to make it work. (Even before knowing how desperate my budget was, my parents offered to pay for the repairs on my car.) 

I would order my prescriptions, and walk to the pharmacy with dread. Would my card go through?  How long could I go in between buying my insulin? How many salads did I need to eat to extend the length of my insulin? Which also sucks because produce is the most expensive part of the grocery store. I stayed incredibly busy, so that I was continually exhausted and only ever staying for one drink with my friends. I changed from drinking cider to beer. There’s a $3 difference at the bar, and even though it’s not a big deal for one week, it adds up over time. I kept that pump and Dexcom information and paperwork in my apartment, because even though I desperately wanted and needed them, could I add another cost? I started getting my groceries delivered, because the delivery fee is less than what I usually spend on impulse buys. Any time I saw change on the sidewalk, I’d pick it up. Some big life stressors that I referenced yesterday were happening too. Dealing with high insulin and insurance costs, and being incredibly stressed is not a good combination. I was doing everything I could. I researched so many of the “how to get out of debt” articles, and the amount people would save was equal to or less than what I spend on prescriptions. What else could I possibly do without telling people just how dire my finances were? 

In case you haven’t noticed, I really value being independent and not asking for help. 

My mom kept asking me why I was throwing money away on car insurance. I snapped. I finally explained that I wasn’t. They couldn’t believe that months had gone by and I hadn’t asked for help. I never fully made it into a hole, but I also couldn’t stand up. I was handed a check and off my car went to the mechanic. When I ordered the insulin pump, the paperwork was sent off with the question, “you’ll pay for this if needed, right?” It’s interesting, I now combine my style of commute and still take the train every so often. It seems to be the way to keep my transportation costs as low as possible. It’s still the area of my budget with the most wiggle room. The lack of worry has made the bank account seem much bigger.

I am lucky. I am grateful and I refill my insulin every time I’m allowed. I’m even running out of room in the fridge. The bank account has not grown, but the worry has lessened. This simple fact has made diabetes so much easier to deal with. 

Phew. It’s a hard road to know you’re qualified, with a good paying job, insurance and you STILL can’t make ends meet. Somewhere, there must be a solution. I don’t know where it is or when I’ll find it. Maybe I can find it here


May 15, 2017

Diabetes Blog Week, hosted by Karen, is back this week! I hope you’ll join me in reading and writing all about diabetes topics from people around the world! 

“Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? (Thank you, Heather, for inspiring this topic!)”

There have been a few stressful events that have happened this year, and as I’ve been coping and strategizing, someone said to me that my intuition on who to trust has been impeccable. How could I have predicted reactions and support so correctly? The answer is simple: diabetes. 

Let me explain, because the stressful events have not all been related to diabetes. I do not like to let diabetes take priority, but sometimes it does. When they happen, I’m kind of a “put my head down and deal with it” person. I definitely have tunnel vision during these moments and have a much harder time seeing the big picture. But there are people who have stayed, asked questions, stepped in and helped. They were just THERE. They were there in the exact way I needed them to be. It’s a great feeling. And later, when I do or don’t want to talk about it, they’ve understood that too. 

So when the big, stressful, life events happen, these are the people who I talked to, lean on and love. I have needed people to brainstorm with, to lean on, to hold me, to distract me. The people who have been 100% supportive in diabetes moments have been 100% in all the other stressful moments. There are other people around, who have spouted support, and appear to be the greatest kind of friend on the outside, but when I truly truly needed them, their “support” during the stress has been more damaging than helpful. 

Thank you diabetes, for shining the light on my greatest friends. 

To read other PWD’s thoughts about Diabetes & the Unexpected, go here

Wishing for Snow 

May 10, 2017

“Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with. Share an interest, hobby, passion, something that is YOU. If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! (This topic is a suggestion from the 2016 #DBlogWeek survey.)”

Maybe you’ve noticed it a time or two here, or Twitter or Instagram or even Facebook, but I LOVE to ski! 

There’s something about cold air, wonderful snow, maybe even some ice, family and friends that make all of the “how do I do this with diabetes?” completely worth it. We have a heat wave here in Boston right now, and walking with friends the other night they were rejoicing and I was wishing for the snow to come back. Yes, I am counting down the days already. And if you’re ever in New England when it’s cold and want to find a mountain with me, I’ll happily join you. 

We are all more than diabetes! Go here to find what makes others more! 

Eighteen Months 

April 19, 2017

I always said I could never take a pump break. Lantus never seemed to work, so how could I possibly stop using one? But I did. A pump site fell out and I don’t think I’ll ever forget the feeling of, “Yes! I’m done!” I thought I might take a month break. 

Eighteen months ago when a pump site fell out and my first thought was, “yes! I’m done!” I knew I needed a break. I never imagined my break would last this long or that I would choose an entirely new-to-me pump. I’m giddy over here, impatiently waiting to start back up on a pump.

I’ve been playing phone tag trying to set up my training, but when I got home yesterday and took the pump out of the box not knowing when I could start, I started crying. Chronic illness emotions are weird, so armed with the instruction book and my prior knowledge f insulin pumps, I taught myself this morning. I just gave myself my first bolus and I’m so giddy that this is back in my life. When I was putting the pump site in, it felt as though no time had passed.

These two photos (and their captions) briefly cover what I’ve been feeling. 

  • I know I still need to go in for training. 
  • I don’t completely know how it’s working for me yet, because starting was an impulsive decision about two hours after my Levemir dose. 
  • Filling this reservoir is weird! 
  • With the ping, I used the long tubing so I could shower with it. I chose the short tubing this time, which is convenient for tucking it into pockets, but it seems SO short. 
  • Bolusing is so much more convenient. 
  • I got into bed and forgot I had to sleep with it. It didn’t bother me last night, but I couldn’t feel it under my back this morning. 
  • I cannot wait to use a temp basal for exercise rather than using foods for safe BGs. 
  • I would be way more nervous about starting this by myself if I was not using the Dexcom. 
  • I’m really grateful to all the T slim users who have offered advice and support and “let me know if you have any questions!” 

Ten Minutes 

April 6, 2017

I get it. I see you for 10 minutes every year. Or, I’ve seen you for 10 minutes every year since I moved to Boston. You’re always very nice and ask about my job, my activities and my A1C (which I don’t get because you have access to it). You’ve always been at the top of my list for personality as far as doctors go. 

And then it happened. Normally your speech goes like this: How long have you had diabetes? That’s amazing; your eyes are still perfect. This is how it went this year: How long have you had diabetes? I can see some retinopathy. 

The tears instantly started falling, but you had already turned your back to write this diagnosis in my file and order images of my eyes. You had me go there and the elderly medical professional made me completely and utterly uncomfortable, forcing my head into this machine, no matter how many times I told her that just by pushing harder, didn’t mean I could see the light. When I saw you again, you told me that the retinopathy was minimal, and that you’d see me again in one year. Why is the timeline for perfect eyes and starting retinopathy the same? It doesn’t make any sense. And to lower my A1C. Don’t you realize that I’m trying desperately to do that, but just because I’m working on it doesn’t mean everything else in life is making that an “easy” task. I was sniffling and probably used your entire box of tissues, but you never asked how I was feeling, just if I had any questions. I don’t even know what questions to ask!! 

You work in a diabetes eye clinic where retinopathy is probably an everyday occurrence. But I’m a person with diabetes who has never had a complication of any kind before. I’ve been taught to freak out about my eyes, so that’s what I’m doing. I’m scared out of my mind.