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)
Hi friends! It seems like I’ve had a lot going on this year and my posts have been sporadic. But I’m still around and I’d love to recap what my year was about. When I DID post that is 🙂 I’d love to call them highlights but honestly a lot of them don’t seem so exciting to fall under that category!
December: 32 years ago today I was diagnosed with type 1 diabetes.
October: What I am very glad about is that I am an empowered patient and have the wisdom to make this sort of determination.
September: Have you ever felt that something in your life needed to be “recharged”?
August: 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.
July: Talking with a true inspiration.
June: This isn’t really diabetes related. But it’s about a huge part of my life – my twin sister.
May: Like the past conferences, I had a wonderful time.
April: I am honored to be hosting the Best of The ‘Betes Blogs for the month of April.
March: It was a little after 1am when I woke up kind of suddenly.
February: Lucky for me, the great people over at Sanofi Diabetes asked if I was willing to share some advice or tips if you will, on traveling with diabetes.
January: When I was growing up with diabetes, there weren’t many books around that I knew of on the topic.
I cannot believe that we are getting ready to say goodbye to another year. Is it me or did this one just fly right by?? I want to wish all of you a very happy and healthy new year. May 2014 be good to all of you 🙂
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.
Have you ever felt that something in your life needed to be “recharged”? I have been going to my current diabetes care office for about 14-15 years. When I met my husband, I think I was still seeing my pediatric endo! Fortunately my mother in law worked in one of the local hospital systems and recommended an endocrinologist to me, one that she knew of from the hospital. And so I went. I was pleased with Dr. R and the rest of the staff including both CDEs that I have been seen by. It was under her encouragement that I went on an insulin pump almost 7 years ago. Then about 2-3 years ago (I think) Dr. R left the practice to go somewhere new and since then I have been seeing her replacement, Dr. K. I am very comfortable with this office. They always get back to me and get any paperwork or prescriptions filled out pretty quickly. They even know me by just the sound of my voice! I go for my visits every 3 months like clockwork. I don’t dislike Dr. K at all but sometimes I feel that she may be too easygoing. Only ordering blood work at my own request. Not fully understanding why I have some minor complications after 31+ years. I have been feeling recently that maybe an overhaul of my health team was in need.
This past weekend we were at a friend’s 40th birthday party where I met a fellow person with T1D. We chatted briefly and she asked who my endocrinologist was. She told me hers and said that she loved her. That got me thinking even more. I made a call to this new doctor yesterday to find out if she was accepting new patients. She is, however a referral from a doctor is needed in order to be seen. Even though it sounded strange to me, I went in search of who could provide me with the referral. Lo and behold, my awesome gastroenterologist was willing to provide me with what I needed. And I have an appointment scheduled for early next month. I have such mixed emotions. I’m hopeful that maybe I will love this doctor. I’m scared about seeing someone new and being in a new environment. I feel bad about finding somewhere different, like I’m cheating on my current health team. I’m optimistic that my diabetes management will get the boost it possibly needs. But most of all I’m nervous that it will turn out to be me, the one who has been too laid-back with things.
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!
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.
So I’ve had a bit of a blogging hiatus, with a few things going on for me personally. Luckily not all of it bad as we welcomed my nephew into the world last Sunday 🙂 Frank Micheal was a bit early and came very fast but he is doing well so far which I am extremely thankful for. My sister, brother in law, big brother and sister are settling into their new “normal”.
Things on the diabetes front are going pretty well. I had another appointment with my endo last week, with a consecutive A1c under 7%. I posted after my last appointment, I was spending some time figuring out if my good A1c was a fluke or the result of hard work on my part. But it appears that it was not in fact a fluke and something that I can hopefully hold onto. As I will ring in my 31st year with T1D next week, this is music to my ears.
You may have seen some recent pictures I’ve posted on Twitter or Instagram of BG readings with a Bayer Contour Next Link meter. Even though I don’t currently use a Medtronic insulin pump for the meter to link to, I purchased the meter and like it. I have an older Contour Link meter but wasn’t too happy with its accuracy. Having tried this new one out that uses Bayer’s new Next text strips, I find its accuracy running along the lines with the Verio IQ and Accu-chek Nano. It supposedly is compatible with the Diasend software but I am currently having issues getting it to work on my MacBook.
Big news in the diabetes community came last week when Insulet announced that their new generation of the OmniPod insulin pump system was approved by the FDA! Being an OmniPodd-er I was ecstatic hearing this. I’ve been using the pods for 10 months now and have become extremely accustomed to using a pump that is tubeless. However, since the pod itself is bigger and more bulkier than a typical infusion set, my concern about real estate reared its ugly head. Having a one third smaller, one quarter lighter pod to wear will be a fantastic upgrade for pod users. And it still holds the same 200 units of insulin! Here are a few snapshots of the new system.
(images were provided by a communications consultancy firm, on behalf of Insulet)
The new PDM also has some enhancements, although it looks pretty similar. To check out some more detailed recaps of the new product from Insulet, read what Scott, Diabetes Mine and Rachel had to say. I guess we will have to wait a couple of months to get our hands on this new insulin pump!
As the holidays and end of 2012 approach, I hope that each and every one of you have happiness and health to share with your loved ones. I for one am hoping that 2013 brings more happy times than its predecessor, especially in the tri-state area.
Unfortunately I’m not talking about some major breakthrough in the research for a cure or some mind blowing new product on the market. I am referring to history that was made yesterday in my own diabetes world. I had my quarterly appointment with the endocrinologist but it was also my annual physical with her, so a much more comprehensive exam. As usual, I was nervous. I hate that I get nervous every time I see her but I can’t seem to help it. Thankfully yesterday was probably one of my best appointments.
I had printed out my BG readings for her, in all sorts of different report variations, from downloading my OmniPod PDM the night before. In scanning over them, I wasn’t too pleased with what I saw. In the past month, my BG was in the 80-180 mg/dL range only 61% of the time. 180-250 was 23%, over 250 was 5%, 60-80 was 9% and under 60 was 2%. In other words, higher than I would have liked. My last A1c test was done at the end of April so I was overdue for my normal 3 month routine. That last result was over 7% and had crept up .2% since the time before that.
As I’m sure I’ve mentioned before, in the past 5-6 years, I have been much more diligent with my diabetes management. Between going on the pump, testing more frequently, using the CGM uninterrupted for the past 3+ years, keeping up with my appointments with the CDE, trying to stick with a regular exercise routine. Despite my efforts though, I have only had an A1c under 7% once. Four years ago. And to this day I still think it was a mistake! However, yesterday it happened again. Since I am not shy about sharing my A1c levels , it was 6.7%. (although it seems much easier to share when it’s a good result!) I literally hesitated for a moment when Dr. K said it and I said to her “wait, what?” It was a complete shock. My overall BG readings have not been much better or worse than they usually are. And especially after feeling that my readings have been higher than I’d like, having almost a 1% drop was not at all what I was expecting.
I was almost too happy to care at the moment about why. But later I really started thinking about it. And honestly the conclusion I came up with is that I wish I knew what I had done right the past 4 months so that I could keep doing it! I’d say in the past 4 months I’ve been more consistent with exercise than before. Yet I wouldn’t say I’ve been consistent ALL the time. (the past 2 weeks for instance have lacked exercise big-time) So the only thing I can think of that had such an impact is my choice of BG meters. When I used older One Touch meters and when I first started using the PDM with the Freestyle strips earlier in the year, I always thought the readings ran low. Since switching to the newer Verio IQ as my primary meter and more recently changing the calibration code on my PDM, my readings run higher. Could this be the magic trick? Is there a scientific reason this could be? I’m not sure and I guess I shall see if this trend continues. And I sure hope it does.
In other news, I have lost some feeling in my feet but this I knew. At my physical exam last year, Dr. K saw this and sent me for an NCV test which came back normal. Yesterday was the same – I stopped feeling the vibration on my feet from the tool thingy (tuning fork?) before it actually stopped vibrating. I do get major pain in my legs when I walk so she had them do a Doppler test. Which also came back normal. So the feeling loss in my lower extremities does not appear to be from nerve damage or circulation issues. While I’m glad it is not for those reasons, I’m stumped as to what it could be from. Something else I will keep monitoring.
Good appointments like this leave me feeling happy, naturally. And hopefully not so nervous for the next one.
If there is one thing I do not do well as a person living with diabetes, it is logging. Anything. When I see my endocrinologist every 3-4 months I just download my BG readings from my meter(s) for the past 30 days, print it out and present it to her. She is fine with that. When I see my CDE however (alternating between her and the endo), we go over my readings in more detail. Since she has the “clinical” software in the office, she downloads both my Omnipod PDM and my Dexcom data. The one thing that is helpful for these appointments with M is to keep track of events such as food intake, exercise, illness etc. Sad as it may be, there is no way I can remember what I ate or how I felt last week! So I usually log these things for about a week prior to my appointment. What I’ve been doing for the longest time is keeping a self made Excel spreadsheet with this information on it.
My next appointment with M is next week so it dawned on me that I needed to start logging. However I was frustrated with the good ol’ Excel file and was trying to find another app available to keep track of such info whether on my iPhone or on the web. Since I already have a few diabetes related apps on my phone, I did some scrutinizing. It turns out that the iBGStar app is working well! (side note: I do have the meter but do not currently use it) It is still a form of data entry since I’m really only entering information when I eat or exercise or don’t feel well but it’s easier for me to use since believe it or not, I am not always near an Excel workbook. The key to entering the actual food I am eating, and not just that I ate fatty food or miscalculated carbs, was to add a new note. The option is already there to add BG, amount of carbs and amount of insulin.
I especially like the way it is presented in the report when you compose data to send via email. Now I am not sure I will actually email her my logbook since that office is anti-email unfortunately but I can at least print it out for her.
I remember the days of having to write down my BG readings before a doctor appointment. I do not want to go back to those days. Ever. Having apps like these is extremely helpful. Especially for someone like me who hates logging with a passion and will find every excuse not to do it. Now if only I was able to email the health care providers in the office I go to.
Yesterday afternoon I had an appointment with my endo. On the train on my way home (my endo is in my home neighborhood, not near my job) I found myself wondering why I wasn’t feeling my usual nerves. It was then that I began to feel like I didn’t care. Like I wasn’t concerned with how my appointment was going to go. I can’t pinpoint what brought those feelings on but I was still pretty calm when I got to the doctor’s office.
Overall my a1c went up a bit, my weight went up a bit and my BP was up a bit. I also had an ANSAR test done. If you’ve never heard of that before, it’s a test that determines anything wrong with the autonomic nervous system. Dr. K is concerned that since I started with retinopathy, the chances of other complications may be likely. All of these new-to-me tests are scary. They are part of the reality I have always been afraid of. But I know they are for the best. If I want to stay healthy, I have to be proactive and diligent about my body. It was not the best appointment of all time. But Dr. K thinks my “control” is decent and knows that I’m doing a lot to manage my diabetes. I appreciate her outlook and her recognition of my hard work. There is more fine tuning that I need to do which will happen with the help of my CDE. And also with my own efforts of keeping up with exercise. I feel like now more than ever, my BG control matters. I’ll be soon commemorating 30 years living with diabetes. And that’s a long time. But to quote Dr. K, “you still have a long life ahead of you”. And I want to make sure that life ahead of me is stable.
So for the record, in looking over my meter downloads, I realized something. I do care. I care enough to check my BG 17-19 times in one day.