I found the diabetes online community back in 2006 when I was researching insulin pumps. Growing up I didn’t know anyone else around my age with type 1. It was very easy to feel isolated or alone. Finding others, even if they didn’t live very close by, that were going through similar challenges or experiences was amazing. It was instant support. Diabetes may have been what got my path to cross with all of these people but there are so many other things that keep us united. Over the years since then, my network of friends continues to grow. I’ve even made some very treasured friendships.
One downfall to finding such valuable people is that there are more people in your life to lose, even if it isn’t diabetes that takes them too soon. Being part of a community like the DOC, you touch people’s lives. Whether it’s blogging, chatting, posting, advocating, texting, sharing, exchanging cards/letters, talking, debating, FaceTiming, brainstorming, walking, teaching, running, suggesting, riding, agreeing, even just nodding. Whatever your involvement is in a community like this one, you matter. And even if it is just one person that you reach, that is one person that feels less alone.
In remembrance of a few people that I had the pleasure of knowing while coping with this thing called diabetes. I hope you are all resting peacefully, my friends.
So it’s been over a year since I’ve last posted. And I think that’s okay. That just means I have a lot of important things going on in my life and nothing exciting to share 😉 I thought I’d not only give the site a make over but also provide some kind of update on what went on in the past year that flew right by!
The hubby and I took a couple of trips last year – back to Turks and Caicos (where we honeymooned) (and thankfully before the hurricane season), Boston, which is our favorite close-ish getaway spot and Alexandria, VA for the Diabetes Unconference. Looking forward to doing some more traveling this year as well.
Health wise I am doing okay. Totally recovered from the elbow surgery I had at the end of 2016. I was very pleased at the outcome of that and it’s great to have a fully functioning arm again! Anxiety wise, that is mainly under control although I did have another bout of panic attacks at the end of last year. Those are not pretty. I would not wish them on anyone. Ever. My PCP was extremely helpful during that time and sadly she has left the practice since. So I cannot even thank her. Cue the sad face. I’ve had some PT recently for my existing back issue (spinal stenosis) which was becoming very bothersome. I’m not sure if the PT actually helped but the bothersome-ness has lightened up a bit so I’m glad for that and hoping it continues. I had my first mammogram in the summer and had to actually go back for an ultrasound. And then was asked to come back in 6 months to repeat both. Talk about nerve wracking! Thankfully all seems to be fine in the boob department. I’m still dealing with gastroparesis flares. It’s been a while since I’ve met with my gastroenterologist so I’m seeing her again soon. Not sure if there are any new treatment options or not but it will be nice to catch up with her and discuss stuff.
I was able to try out the Freestyle Libre system a couple of months ago. I used it in conjunction to my Dexcom system since it does not send alerts of low or high blood sugar readings. And I do not want to go without those. Otherwise it’s a great system. Very easy to insert a sensor, the sensor is nice and small and very slim, accuracy was very good for me and very convenient to just hold the reader up to the sensor for a reading as opposed to doing a finger stick. The 12 hour warm up period (for the US version) kind of stinks.
My portable pancreas has recently gotten a make over. I am a long time OmniPod user (love that pump!) and Dexcom user (love that CGM!). However I do like to have, or at least try, the latest D technology that is out there. One thing that other pumps have over the OmniPod in my opinion, is more precise I:C ratios. I am very insulin resistant so have pretty low ratios. Even those don’t work well for me sometimes yet my endo hates to lower it even more. With the Tandem and Medtronic pumps, you can have ratios lower than whole numbers, which seems to work in my favor. Last year I traded in my Animas Vibe pump (before they actually announced they were going out of the pump business!) for the Medtronic 630G. It had been a long time since I used a Medtronic product but I was pleased with the changes they made. I liked the pump but it was my back up. Shortly after that, the 670G hybrid closed loop system came out. I didn’t think I was interested in that at first so didn’t initiate the upgrade program. However, after some months of hearing experiences with it, I began to wonder if it would benefit me. So I recently upgraded to the 670G and started in auto mode yesterday. More to come on that………..
If I didn’t bore you to death, and you’re still reading, thank you 🙂 I will try to check in more often around here!
Hi there. Believe it or not, this blog here does still exist. I can’t believe it’s been over a year since I’ve posted anything. WordPress even looks different since the last time I’ve written! To anyone that may care, I apologize (and I do not mean that in a snarky way!) I feel that life gets in the way a lot of times. Or it could just be something that I’ve realized about myself recently ….. I am lazy AF.
My friend George posted recently and maybe you can say he gave me a little motivation to post for the first time in a while as well. I would have a lot to go over to update you on the past 14 months so I won’t go down that road. I’ll just mention the big parts 🙂
I commemorated the 35th anniversary of my diabetes diagnosis on December 24th. It’s truly hard to believe I’m old enough to have had type 1 for so long! I didn’t necessarily do anything to “celebrate”. Being that it’s on Christmas eve, that always steals the thunder 😉
Let’s see. Most recently, I have been recovering from surgery to repair tennis elbow (or lateral epicondylitis). Don’t ask me how I got that because I haven’t the slightest idea. I first went to the doctor for it March of last year after it had been bothering me for a few months. He tried a cortisone injection but sadly, there was no improvement. I went back in September after the pain was getting worse and the doctor was straight with me that if it was lasting this long with no results from cortisone, it was highly unlikely any other treatment would work beside surgery. This doctor had performed not one but two trigger finger surgeries on me in the past so if I had to have another surgery, I was glad it would be by him. He sent me for an MRI just to verify the condition and it showed that not only were the tendons damaged, there was a tear as well. No wonder it hurt so much! So a bit over 6 weeks ago the surgery was done and recovery has been going well so far. It’s been challenging at times since it was on my dominant arm, but the incision healed nicely and I hope to be using my arm again fully soon.
I’ve had some struggles on the blood sugar management front – my A1c was at its highest in years in the fall. I’ve managed to get it back down some at my endo appointment last week but it still needs work. I do attribute some of the rise to a change in birth control pills (TMI?) that occurred in the summer. Man, did I have some awful insulin resistance! My insulin was like water for quite a few weeks. I am more independent when it comes to changing insulin rates and whatnot but it came to the point where I called my endo in desperation. She could not believe how much insulin I was taking. But I’m glad I thought of the new meds because other then raising my ratios, she didn’t offer much in terms of finding the root cause. Things got more “normal” when I switched back to the pill I had been taking previously. Thank goodness.
And back to my laziness. In being a hermit for a few weeks recovering from surgery, it highlighted just how lazy I really am. And that definitely plays a part in the work that my A1c needs. I do not log. Ever. I almost never upload Dexcom or pump info. I occasionally check the Clarity app to see what my estimated A1c is (which was spot on with my latest reading at the endo by the way) but don’t look at the trends really. I don’t exercise like I should. I don’t eat like I should. I don’t pre-bolus like I should. Yet I do bolus for every food I eat. I do wear a medical ID bracelet. I do carry some form of glucose with me. I do not over treat lows. Those things my endo always looks for makes me look like a super star. But how do I get over my laziness and do the little things that will make the most difference? I wish it were as simple as telling myself to just do it but I already hear in my head – I don’t feel like it. Have you ever been faced with similar feelings? Have you found something that gave yourself a good kick in the rear? I’m open to suggestions 🙂 Being that I’ve had strong anxiety about something happening to me health-wise (more on that in another post), I’m surprised that hasn’t been the kick that I need.
Last night I got home from the first ever Diabetes UnConference in Las Vegas. During my trip home, I saw on social media that Stephen wrote a blog post about it and I thought to myself, wow he’s quick! But then I thought, he had the right idea. While it’s still fresh in my mind I wanted to share my thoughts.
The above photo is when we were on top of Las Vegas. We took a ride on the High Roller (an observation wheel that goes 550 feet up and gives the most amazing panoramic views of Vegas). It was incredible.
I’ve been to numerous diabetes conferences before. And I was always happy to attend them not only to learn from the experts or panelists but also to connect with others from the diabetes community. This was a little different. The goal of the first UnConference was to allow the attendees to create the agenda, using various methods for us all to share with and learn from each other as peers. I think it did that very well. Nothing was shared on social media and I won’t even share explicit details here. Just imagine being with about 90 other people with diabetes who get it, talking about what is important to all of us and I probably don’t even need to go into much detail. As wonderful and important as online connections are, in-real-life connections are that much more powerful. And stick with you forever.
Christel asked us to write down one word to describe how we were feeling at the end. (I hope I don’t get in trouble for sharing this part!) I was, and still am, feeling extremely thankful. Finding the diabetes online community about 8 1/2 years ago when I was getting my first insulin pump was the best thing that ever happened to me. And it has been extraordinary to watch it continue to grow over the years. I’ve learned more over that time period than I did the first 24 years as a person with T1. And I’m not exaggerating. I wish so much that my father would have had the same opportunity. I think it would have been so good for him and maybe things could have turned out differently. The diabetes community (both online and off) has had an immensely positive impact on my life and for that I will forever be thankful. I wish that every person with diabetes has this same opportunity and I will do whatever I can to reach those who may not have it yet.
This above photo is one of the amazing views from the sky during my flight home back to the East Coast. Looking through the (few) pictures I took during the weekend, I sensed a theme. We were on top of Vegas. I was on top of the sky. And what I was left feeling – on top of the world.
I posted this picture on Instagram a few weeks ago.
And it’s true. I haven’t been a stranger to massages for quite some time. I’ve always loved them. But I never went as often as I would’ve liked. I’m a big believer in how good they are for you, both physically and mentally. It reduces stress, pain, muscle tension and improves circulation. It also has been known for helping a wide array of things like headaches, joint pain, anxiety and digestive disorders to name a few. All I know is that I can forget all my worries and stress for a whole 60 or 90 minutes and concentrate instead on relaxation and feeling good. Who wouldn’t want that?
I became a member of a spa that opened near my home close to 2 years ago. Since then, I’ve been going for massages more regularly especially in the last few months. I’ve had lower back pain for the longest time. There has been a noticeable improvement in the past year or so. I’ve also had major pain in my lower legs when walking (even at a slow pace or short distances) for quite a long time and have found the massages help a great deal. Even just for my overall well being and state of mind, it does good. And that in turn helps my diabetes as well since everything is connected!
It’s an investment, since massage therapy is certainly not cheap. But it’s one that I’m gladly willing to make. Even though I had a massage today, I’m really looking forward to my next appointment 🙂
I will be posting about my recent change to the Tandem t:slim insulin pump hopefully soon, for those that are interested!
I realize I have not been blogging much lately so wanted to say hello to everyone and let you all know what’s been going on around my neck of the woods and keeping me busy. Or maybe distracted.
- It seems my blog anniversary completely slipped by me! The end of August marked four years since I started here and I want to thank everyone that has ever stopped by to read, to comment and support me. This wouldn’t mean to me what it does if it weren’t for all of you.
- In July, I had a repeat gastric emptying scan done. Unfortunately it confirmed what both me and my gastroenterologist figured, my gastroparesis has progressed. Compared to the first one I had four years ago, it is still considered mild but it has gotten worse. She prescribed two medications to take as needed and luckily I’ve been able to manage without them. My hubby did some investigating to see if there were any natural remedies to help and he found out about ginger root. I have been taking capsules before most meals and have noticed that it does help. Thank you hubby! I have learned a lot about this condition and it is not something that I would wish on anyone. I’m truly hoping that managing my blood sugar as best I can will help keep it mild.
- A few weeks ago I had my very first insulin pump infusion site infection, after almost 8 years of pumping. I had removed the pod from my lower back and it was a little sore which is not completely unusual. However the next day it was extremely painful and with the advice of a friend, I had it looked at by a doctor. It was indeed infected so was put on 10 days of an oral antibiotic. It has healed nicely but I have to admit I’m a bit weary of getting another one. I’m hoping it was just a one-time-fluke type of thing.
- I have been more involved with IRL citizenship and advocacy type efforts. I am part of the citizenship committee as well as the disability network at my job. It is very fulfilling to be part of such great networks and helps make my “regular” job more worthwhile. I am also on the walk committee of my local JDRF chapter this year. It makes me proud to be part of an organization that has announced such exciting advances in type 1 diabetes research in recent months.
- Over the past 2 months, I haven’t exercised and my eating habits weren’t always the greatest. While I’m finally working on changing that now, I was extremely surprised at the results from my endo appointment this past week. A1c went down, not up like I expected and also one of the lowest I’ve ever had. Also I lost a couple of pounds. None of this makes much sense to me and really not the motivation I was hoping for to get back on track but honestly I’ll take it. It makes me think back to all the times I was expecting and hoping for an A1c a lot lower than it turned out to be. Sometimes diabetes is just unpredictable.
- Most importantly, on September 3rd, my Mema (grandmother) passed away. It wasn’t sudden as her health had deteriorated rapidly since earlier in the year but I still cannot believe she’s gone. I’m glad I got to spend more time with her the few weeks before she passed, even though she may not have realized it was me. I’m glad and thankful she was a part of my life for so long. I’m glad that she lived such a full life – she would have been 95 next month, had 8 grandchildren and 17 great grandchildren. I’m glad that she went peacefully and is now in a better place. But it still hurts and I miss her dearly.
I suppose that’s most of it in a nutshell. I’m hoping for more peaceful times to come and to make a better effort at blogging more often. Especially with a big month coming up with a lot to do and say. Oh, one more thing. I got the new iPhone 6 on Friday (I was one of the crazy people who pre-ordered early in the morning on September 12th and not the crazy person who got on a line at the Apple store two weeks ago) and would highly recommend it for other iPhone lovers out there!
(image credit goes to the internet)
I have been living with T1 diabetes for almost 33 years. That is 11,863 days or 1,694 weeks or 284,712 hours or even 1,024,963,200 seconds without ever getting a break from having to fill in for my non working, good for nothing pancreas. When I was a child, my parents did most of the worrying and diabetes work. But it was still there. As I grew into my teenage years, my focus sadly was not so much on my diabetes. But it was still there. When I went to college and got my first full time job and started making an adult life for myself, I didn’t want my diabetes to be at the forefront of my day to day tasks. But it was still there. And it will always be there.
I love Ginger. I “met” her initially online, then got to meet her in person a few times and also worked with her briefly for coaching. I honestly learned a lot from her in regard to diet and exercise, and that was after living with diabetes forever. She always has such a positive outlook and loves to share her knowledge to help others. I read her books Your Diabetes Science Experiment and Emotional Eating with Diabetes and found them both to be easy reads, full of useful information. When I was asked to give tiny input and also to give a preview of her newest book, Dealing with Diabetes Burnout, of course I said yes.
In more recent years, I have put a lot of effort into working on my diabetes management. (I hate to use the term “management” but I guess that’s what we try to do is manage our blood sugar right?) And I can sometimes feel it taking its toll. One thing Ginger mentions in the beginning of the book is “It’s endless. Whether or not you become noticeably frustrated with your diabetes, the constant thought, energy and worry is inevitable. And that can lead to burnout. That constant effort and worry is exhausting, even if it motivates you to take care of yourself”. Bingo.
I always try to focus on the positive and not dwell on the negative, especially when it comes to diabetes. Another thing Ginger says in the book is “Diabetes may get to use up a tremendous amount of my mental energy every day, but I refuse to let it use up my happiness” and I can totally relate. I think that is the key to not losing your mind completely.
Reading this book made me realize that number one I am not alone with feeling overwhelmed at times. It also made me realize that it’s okay and totally understandable to get down from time to time. I almost think we have to in order to cope healthily. Ginger offers great insight in how to get to the bottom of your feelings and more importantly how to get through it. No matter what you’re feeling today or what you’ve felt in the past, I would highly recommend reading this book. It might be just what you didn’t know you needed. I have an appointment with my endocrinologist tomorrow and will be mentioning it to her to tell her other patients.
Today is my father’s birthday and he would have been 72. It’s hard for me to imagine him at such a mature age, since it’s been so long that he has been gone. While the ache in my heart from losing him isn’t new anymore, it is still there and always will be. I found the below images and found them to be perfect for today.
Happy birthday Daddy. I will always miss you deeply.
Apparently I was busy Friday, Saturday and Sunday since I didn’t get a chance to post the last three days of Diabetes Blog Week! But I’m here now to wrap things up in a combined post.
Diabetes Life Hacks from Friday was the sharing of the (non-medical) tips and tricks that help you in the day-to-day management of diabetes. Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)
I wouldn’t say I have too many suggestions of tips and tricks that I use that haven’t been posted already. The only thing I can think of is using hydrocortisone cream after removing pods (or infusion sets). I know those little cannulas can leave marks, some of which can seem permanent, but I think this has helped in that area. I use the one by Aveeno but I would imagine any type would work just as well. I just apply a liberal amount to the area which was the home for the pod for the previous 3 days. I also used this before switching to the pod, when I used a tubed pump with infusion sets. I really think that it helps the skin heal and not leave any permanent marks.
Saturday Snapshots from Saturday was back for another year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.
I post lots of diabetes related pictures on Facebook or Instagram on a normal basis. Doesn’t everyone?? Here is one from Saturday specifically – it was a soft landing from a super high BG resulting from a leaky pod. It took a little longer than I would have liked for the new pod and insulin to catch up but at least I didn’t crash 🙂 (for the record, leaky pods is not a normal occurrence for me. I had it on my left arm and had bumped it while walking through doorways not once but twice so I’m thinking I jarred it loose)
And finally Sunday was a wrap up of another Diabetes Blog Week, let’s share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!
While I find it completely impossible to totally keep up with everything during blog week (umm hello, I couldn’t even blog every day!) and didn’t really have the time to comment much, I did read a lot and love seeing everyone come together and share thoughts and ideas. A huge thank you to Karen who illustrates her awesomeness every year by organizing this event. I will be going back to my regularly-scheduled-once-in-a-while-blogging now 😉
Day 4 of Diabetes Blog Week is here and we are getting back to the positive with our topic Mantras and More. Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets you through a hard day? Or, more specifically, a hard diabetes day? Something positive you tell yourself, or mantras, or what you fall back on to get you through. Maybe we’ve done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)
There were two things that came immediately to mind when I read the topic for today. They may sound silly but I’m posting them anyway 🙂
The first is you can do this. I think even before the official You Can Do This Project was born, this saying was a bit of a pep talk I’d use to myself when things get tough. Battling stubborn high blood sugar? You can do this. A1c not where I want it? You can do this. Being sent for tests to rule out diabetes related complication? You can do this. Scary feeling low blood sugar seeming to last forever? You can do this. Getting up the courage to tell my story? You can do this. And on and on. Doing the things that at times seem like I can’t, certainly beats the alternative.
The second is a blast from the past and for some reason got stuck in my head when thinking about diabetes related mantras. Anyone remember this? Love it! (shout out to Mike who I learned thought of this in relation to today’s topic as well!)
Suga Sheen – All The Diabetics
I think most importantly, when the going gets tough I just remind myself that things could always be worse. Even if it may seem like the worst possible moment in the world, it most likely is not.