A few of you had asked me to keep them posted on my new endocrinologist story. Which I appreciated. And so here is an update.
I saw Dr. R last week. Was it magical? No. Was it dreadful? No. Was it satisfactory? Yes. It was kind of strange to have to start from the very beginning of my diabetes life when giving her my complete history. But I had to and she updated my records with the information I gave her. I of course included the minor complications I have been dealing with over the past couple of years. She wasn’t surprised by this since I have been living with diabetes for over 30 years. She asked if I was on an insulin pump and when I confirmed I was indeed on the OmniPod, she asked for the PDM right away to download. Note: at my old practice, this information was only downloaded at my CDE appointments. She inquired about my last A1c and how it has been generally speaking. When I stated that since being on the Dexcom CGM, it has been pretty stable around the 7% mark, sometimes a bit lower, sometimes a bit higher, she asked for the Dexcom to be downloaded and was almost shocked why I didn’t give it to her upfront. I explained that I was not used to having my devices downloaded at endo appointments. I felt so silly! We spoke about general endo issues as well including celiac. When I was tested for celiac about 2 years ago, it wasn’t at the suggestion of my endo but at my own request. I inquired how my visits would go in terms of seeing her and other staff in the practice, like a CDE for example, she said to her it was apparent that I did not need continued education so it would be quarterly visits to see her. However I would have access to a CDE in the practice, one who I could contact for anything. She ordered a bunch of blood work which was done in the in-office lab (plus!) and a urine analysis. She requested I see her in three months when she will perform a follow up sonogram on thyroid nodes that were identified on me last year. I called yesterday for the results of my lab work and was pleasantly surprised when she was the one who called me back. The blood work and urine was normal and my A1c is back under 7%. All of which made me extremely happy 🙂
Moral of the story. Was I blown away by the first meeting with this new doctor? I wouldn’t say so. But she was more assertive in addressing things than what I’m used to. And she adjusted one of my insulin to carb ratios, something that has never been done for me by an endocrinologist. And we got along. My dear husband’s view is that I became stagnant at my old practice and a change would be good. This doctor is also associated with a bigger and better network which could be a benefit down the road. I’m feeling positive which is definitely a good thing. I think I will take the next three months to decide but I’m already leaning toward keeping Dr. R. What I am very glad about is that I am an empowered patient and have the wisdom to make this sort of determination. I wish everyone could have that knowledge and not settle for mediocre health care.
Two posts in one day. Another first for me 😉
Strip Safely. This is a fairly new collaboration within the diabetes online community to spread knowledge about the fact that the glucose test strips we use today, yes in 2013, are not completely accurate. I have known this and it is an issue that bothers me greatly. I think about all the people with diabetes who are not aware of an issue like this. Those that are outside of the diabetes community. Those that take their BG readings for granted. And it can set someone up for major tragedy. Since I know my BG meter is not 100% accurate, I always double and triple check if I get a questionable reading. Too high or too low or totally off from my Dexcom, continuous glucose monitor. Someone who is naive to meter accuracy, would go ahead and dose insulin based on a questionable reading. That could lead to an immediate danger of an insulin overdose or not administering enough insulin which could lead to high blood sugar and the subsequent complications.
I don’t want to go back to the days of urine testing where you knew in what “range” your sugar was. When I was diagnosed in 1981 that was the method used to test glucose levels. You peed on a strip (similar to ketone test strips) and your urine turned it a certain color depending on how much glucose was in your urine. Probably from hours ago. That color represented a range of readings. When I bolus from my insulin pump today, it doesn’t ask me what range my blood glucose is. It asks for a specific reading that is used to calculate a precise amount of insulin needed to either correct a high or cover carbohydrates. Carb counting and insulin dosing can be difficult enough at times without factoring in an inaccurate blood glucose reading.
Every single thing about diabetes management lies in the blood sugar. How can one possibly manage blood sugar if they do not know with certainty what it is? The answer? One cannot. And when people’s lives are at stake I can’t think of any better reason to campaign for better test strip accuracy and oversight over that market.
Take the time to write a letter to your elected officials. Urge them to attend the Diabetes Technology Society meeting taking place on September 9th. Tonight on Twitter, there is a special time designated between 8 and 9pm, EST, to tweet about this issue to your elected officials. They need to be aware of this important issue. We need support to get this resolved. Don’t forget to use the hashtag #stripsafely
The definition of revolution, according to Google, is a forcible overthrow of a government or social order for a new system. I am starting to think that my diabetes devices are starting a revolution. I am not sure what new system they would like. Maybe a working natural endocrine system? That would sure be nice!
I have been using the OmniPod system for 19 months; the new generation system for over 2 of that 19 months. Within that time frame I’ve only had a few instances of bad pods or issues of that nature. Until recently. I obviously cannot prove that these new issues are due to the mechanics of the new pods. However since I haven’t had issues before, that is what I am lead to believe. A couple of weeks ago I had three pod issues in a row – two bleeders and one that was leaking insulin. On various site locations. I took a break from the pods for almost 2 weeks. Today was day 3 of my first pod since that break. And I got an occlusion during my breakfast bolus. Unfortunately I did not have an extra pod with me nor any syringes (that situation was remedied as soon as I got my hands on my supply) and I had to go home from work to get insulin. Not the best situation to be in. When I removed the pod, there were no visible signs of cause for an occlusion. Taking another break.
Also, I have been using a Dexcom CGMS for almost 5 years; the G4 system for 9 months of those 5 years. For most of that time I have used my outer thighs primarily for sensor sites since I cannot use them for infusion sites (due to lack of absorption). No major problems other than the occasional failed or wacky sensor, one bad transmitter and one broken receiver. In all that time. Then all of a sudden in the past few weeks I have had numerous bleeding sites. Some that have not affected the performance, some that have. I am sensor-less at the moment, giving my skin time to breathe. But I am going to attempt another one this evening. I am honestly lost without my CGM.
Using diabetes devices should not be stressful. I normally do not feel burnt out easily when it comes to my diabetes. But these recent problems have me totally burnt out. I can’t help but feel that all of a sudden, I am doing things wrong. I’m hoping this revolution will be put to an end soon when they realize a working pancreas is not going to happen 😉
This has been one rough week and I cannot wait until it is behind me.
- My boss is on vacation so I’ve been filling in for him. That has lead to some hectic times in the office. It’s great being in charge sometimes but I am looking forward to having that extra load lifted come Monday! Also at work, being part of a huge organization can create complicated processes and frustration that are truly unnecessary.
- I was expecting a shipment at home from Modell’s (new sneaks baby) this week. It was initially shipped via FedEx SmartPost which means that FedEx brings it to the US Post Office who then delivers it. In tracking this shipment, I saw that it went from my city, to the next one over, then to New Jersey, a whole other state. I cannot begin to tell you the frustration I had in trying to get to the bottom of where it was going to wind up. Sitting silent on your end of the phone because you cannot get passed the automated voice prompt in order to speak to a real person. USPS needs to improve their telephone customer service system!
- Insurance. I admit I’ve never really had to deal with insurance woes. My coverage is above average and never resulted in denied claims or anything of that nature. This year, my employer switched to Anthem BCBS and I hate them. Every shipment of pods that I get from Edgepark is initially denied, they request medical records (of what kind, I have no idea) and take 2 months or more to finally approve. My last order from 5/22/13 is still not approved. This is the third time they’ve done this and Edgepark will rightfully be hesitant to send my next shipment which is scheduled for 8/3. I’ve attempted to work something out with them so that this does not happen every time to no avail. This has become so frustrating and now also worrisome that I will not receive my pods in a timely manner.
- My employer offers a health advocate service and I figured my insurance approval for pods issue was the perfect opportunity to engage such a service. This is what I was told by them today “Unfortunately, the distributor has the right to hold any shipment if payment is not received. Your only option would be to pay the charges and submit the bill to the insurance carrier for reimbursement as the request for medical records are to determine medical necessity.” Hello more frustration.
- Insurance. I admit I’ve never dealt with insurance woes. My (previous) pump was an Animas Ping that came out of warranty last month. I received a new one with word from Animas that no preauthorization was required and that it was covered 100% under my durable medical equipment coverage. Anthem has approved this claim with the amount of the pump not covered. Animas claims they are working on it and assured me I would not have to pay for the pump. I informed them more than once I am NOT paying $6,000 for the pump. So incredibly frustrating.
- My endo appointment was last week and not only did my A1c go up a bit, so did my cholesterol. This is the first time ever that it’s been slightly elevated so I’m not terribly concerned. However I am trying to think of what could have possibly caused it and am extremely frustrated that I can’t seem to narrow it down to anything in particular. If anything, I’ve been exercising more and eating a bit better!
- In the 18 months I’ve been using the OmniPod system, I have had very few issues with pod failures and other problems. Last week when it was about 100 degrees in NY, I changed a pod to my lower back only to sweat it off in 5-10 minutes flat. Since I was afraid of sweating more pods off, I was mainly using my abdomen for pod sites, although still rotating areas as much as I could. One pod turned into a bleeder and when I took it off looked possibly infected. Luckily I tended it to right away and it was not actually infected. The pod after that started leaking insulin and left a huge welt on my belly. Thinking I should give my abdomen a break and with slightly cooler weather, I turned to my top butt for the next pod. Which also turned into a bleeder. Three pods in a row that had to come off early and resulted in high BG. Insulet is replacing 2 of the 3 pods however that does not replace the frustration it has been to deal with this issue. I am extremely thankful that I have an alternate pump to use instead for the time being.
Can I scream now??! I hope you are having a much less frustrating week!
I have always struggled with maintaining an exercise regimen. I’ve tried gyms and never stick with it so wind up cancelling my membership. I do my best working out at home so I have tried numerous workout programs. My generous hubby got me an elliptical a few years ago which did get some good use but not consistently. I liked the Biggest Loser Challenge game for the Wii for a while and Zumba for Xbox Kinect. Those didn’t last either. I even did a Kettlenetics program for a short time. I worked with Ginger for a bit and worked on some routines that she gave me. I didn’t mind them but wasn’t something I really enjoyed doing either (sorry G!!) . For some reason I never stay motivated enough to keep up with something. That is until recently.
Working with Ginger, I learned how your body and BG are affected differently from different types of exercise. Ultimately weight training or intervals are better for losing weight as well as for managing BG. (I will not pretend to be the expert and get into all the details here! 😉 ) I’ve heard about programs like P90X and Insanity, that they are difficult but result provoking. For some reason though, I never had any interest in trying them. However, my fellow T1D friend Jen, posted a few times about a fitness program called Les Mills Pump on Facebook and it got me intrigued. I chatted a little with her about it and figured I’d give it a try. Well, I love it! It’s a 90 day program consisting of eight different workout DVD’s of lighter weight training at high repetitions. It comes with a schedule that you should adhere to that I don’t exactly follow but have been working out 4-5 days a week which is a HUGE improvement for me. Along with that program I am also alternating some HIIT spin workouts on my newer spin bike courtesy again of my generous hubby 🙂 Although the program is suited for 90 days, I can see this as something I’ll stick with much longer than that.
Have I noticed any weight loss yet? Not exactly. But I am hoping to see a difference in my body soon. I am not only doing this to lose weight. My BG have been fabulous (for the most part of course – it is diabetes we are talking about here) and I feel great. More important is that I actually look forward to working out when I get home from work or on the weekends and it doesn’t feel so much like a chore anymore! I truly find motivation from others. Their posts. Their pictures. Their stories. I hope that this pushes a little motivation your way if you are in need of some!
(image credit goes to the internet for these)
**I do not have any relations with Beach Body or Nintendo or Microsoft nor do they have any idea I even wrote this post. I do not work for Ginger or Jen but am lucky to be friends with them from the diabetes community. I would however recommend getting to know both of them 🙂 Thank you to both of them for sharing their knowledge and motivation with others. It is greatly appreciated. And also a thank you to my husband for always being supportive of my overall health and encouraging me to do things that will keep me healthy.**
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?
My diabetes health care team consists of two people for the most part – my endocrinologist and my diabetes educator (CDE). I am fortunate to consider my relationship with both of them pretty darn good. I spend more time with my CDE, M, at each visit (although I hate to admit it’s been a while since I’ve seen her) since we go over in more detail my blood sugar readings, glucose monitor history and other records like food and exercise. My endo, Dr. K, goes over things with me at more of a high level. Since M and I do a lot of poking and prodding while together, I feel like she has a true sense of my day to day management. I also talk more with her about my advocacy efforts, social media involvement included. With that being said, I think there is something that I would like Dr. K to know.
I’ve started with minor complications. And this seems to surprise Dr. K. I’ve only been seeing her for about 2 years. (I’ve been going to that diabetes practice for about 15 years but Dr. K took over for my old endo when she left for a different practice) For this reason, she has only really seen the better side of my diabetes management. When I first began being treated here, I was on MDIs of a sliding scale with an A1c in the 8%-9% range if I had to guess. Then around 2006, I got much more serious about things and got an insulin pump. It was ever so slow progress, but over the years since then, there has been improvement in both my A1c and my overall management. Maybe in her eyes, this is how I’ve always been. But I haven’t. I’ve also have diabetes for 31 years. This is a long time of high and low glucose levels. Much of that time with higher than desired levels for various reasons. These things can lead to complications. I’ve seen what can happen through my father. And I am scared to freaking death of that. I’m doing everything I possibly can, now, to keep the complications to a minimum. I sincerely appreciate her goal of keeping my A1c at a desired level, without too many lows, to keep my diabetes health in check. I’m very glad she realizes the importance of that in this stage of my life. But I’m not sure why she’s surprised at what has started in my body. I don’t think she’s ever asked what my diabetes was like all those years ago. Maybe that would help her put things in better perspective. Even so, I’m hoping we can continue to work together to keep me alive and my organs healthy for a long, long time.
I have been having a rough time with my blood sugar lately. Stubborn highs. And by lately I mean in the past few weeks. I have been more sedentary than usual; being sick twice in a span of about a month and fully recuperating from said illnesses. But I am starting to get back into more exercise. I am under a lot of stress. And I know this can and will affect my readings. Hello cortisol.
I am trying to account for these things with more insulin. Not that I like taking more insulin but if that’s what it takes to get better BG right now, that’s what it takes. However it’s not always helping. I can have 20-25% more basal running for a few hours and my 200 mg/dL won’t budge. I can add a few grams of carbs to what I’m actually eating and still see an upward trend.
There are so, so many factors that impact blood sugar that I’m trying to think of everything. Well almost everything anyway. This made me wonder if there is another underlying cause. Scar tissue. I have been pumping for a little over 6 years now. And using the OmniPod for 1. The abdomen and lower back areas are my primary real estate for infusion sets. However I rotate all over those areas as best I can. I occasionally use my arms but that area is iffy when it comes to absorption so it’s rare. I get no absorption from my legs so those are my main territory for Dexcom sensors. When I remove old pods, there is no sign of bent cannulas or blood and I am not getting no delivery alarms so there are no obvious occlusions. This may sound like an uneducated question, ya know coming from someone who has been living with diabetes for over 30 years, but how do you know when scar tissue is a problem? Obviously the insulin isn’t absorbing the way it should so high BG would be a clue. But what else should I look for? How do I know if scar tissue is the cause of my frustration? Any experience or information is welcome!
Diabetes Art Day is a fun event started by my friend Lee Ann to “encourage individuals and families with diabetes to engage in creative visual expression to communicate their experience with diabetes, connect with others, raise awareness, and promote insight and positive coping skills”. One thing that I have learned over the past few years participating in this is that I’m really not all that creative 😉 But I still have fun and especially love seeing the entries by others in the community.
My submission for this year is about the ups and downs of diabetes. Figuratively and literally. There are both good and bad times living with diabetes. And even though the bad times can seem overpowering and never ending at times, in reality, the good times are bigger. And this I believe is what gets us through.
My last A1c about 6 weeks ago was not only one of my lowest ever but also close to a 1% drop in 3 months. As ecstatic as that made me, I wasn’t completely satisfied with the result since I don’t exactly know what caused it. I have suspicions that it could have been my switch to primarily using a higher reading BG meter but not sure how I can prove that. Other than switching back to a lower reading one and hoping for a higher A1c again? No thanks. Now feeling even more pressure to hold onto that golden A1c, I am making more efforts to keep it there with ways I know how. With good BGs.
As I’ve mentioned many times before, exercise and I have a love/hate relationship. I love to workout. (Honestly!) However my schedule sometimes hates to have time for it. With that being said, the past few weeks I have made a conscious effort to not fall off that exercise wagon. And I’ve been doing good, averaging workouts about 3-4 times a week. I’d love to do even more and when I can, I do. Additionally, I have changed my diet with the help of Ginger. For the past few weeks, I have been eating about half the carbs I used to, sometimes less. Now I didn’t eat a ton before but still more than I probably needed. And the difference in my BG readings has been phenomenal. I have had a fair share of “no hitters” in recent weeks. For me that means my BG is between 70 and 200 mg/dL for a full 24 hours. I am by no means saying things have been perfect. Because well, there is no such thing. But I’ve been very happy to see the type of readings that should result in a recommended A1c level. I plan to actually download my Dexcom results to take a peek at any new trends rearing their head. And maybe get an illustration of the differences I am seeing.
All the reports you hear about how to stay healthy or lose weight are on to something. Diet and exercise. That’s what it really comes down to. And I’m hoping that my A1c will remain where it was last time when I see my endo again in December. Even lower would be nice but I’m not that greedy 😉
*please note that I am not promoting changes for anyone’s lifestyle. This is currently what is working well for me and as we all know, not only does diabetes vary, so does health in general.
One of the things that I struggle most with in terms of my health and(or) diabetes management is consistent exercise. Usually I do well for a few weeks then work hours are longer or I have more things to do and I get off track. I’ve made a promise to myself recently that I am going to make it a priority in my life no matter what. What helps me a lot to stay motivated honestly is support and inspiration of others. When I see someone post about working out or read about the accomplishments of athletes living with diabetes or pass by someone who is running or riding a bike in my neighborhood, I want to get active.
That is why I love the Big Blue Test. It is a movement started by the Diabetes Hands Foundation in 2010, to help promote the positive affect physical activity has not only on a person with diabetes’ blood sugar, but on everyone’s health in general. It is so simple. All you have to do is test your blood sugar, exercise for at least 14 minutes, test your blood sugar again and log it over at http://www.bigbluetest.org. Those people without diabetes can participate also, just minus the blood sugar readings part. The best part is this: if 20,000 entries are logged by November 14th, Roche will donate $100,000 to organizations that will provide life saving diabetes supplies to those who need it the most.
I know together, we can achieve this goal and help those less fortunate than us while helping ourselves stay healthy. I’ve logged my Big Blue Test three times already this week. Have you?