Updates.

So summer 2015 is almost over already.  And only 4 months left of this year.  How on earth did that happen??!?  This year is completely flying by.  It’s been months since I’ve posted, so I thought I’d give a general update.  In case anyone wants to know 🙂

Since mid-March, I’ve been back on my beloved OmniPod.  I switched to a different pump at the end of last year because of insurance changes.  My durable medical equipment is no longer covered at 100% and the cost of pods are significantly more expensive compared to traditional pump infusion sets and reservoirs.  However, I received a promotion at work in March that came with a decent raise.  So I jumped back on the OmniPod since I could afford it better.  And I’m one happy pumper!

I was using Apidra in my insulin pumps for over 3 years.  Come January 1st, my insurance stopped covering it.  Since they were already not covering Humalog, that left me with switching to Novolog.  I used Novolog for some time before switching to Apidra and it worked ok.  So I went back to it.  Until recent weeks, I was noticing high postprandial readings and realized it could’ve been the insulin.  One of the benefits I found from Apidra was better postprandials.  I consulted my CDE about it and she offered to file a pre authorization for me.  I figured why not?  Well it was approved!  So I am now able to get Apidra for the next year.  Phew.

I had my quarterly appointment last week with my retina specialist.  Since it’s going on 4 years since I was diagnosed with retinopathy/DME, these appointments are always a little nerve racking.  But I received a good report!  After just one treatment of Lucentis, my eyes have been stable since.  For this I am EXTREMELY thankful.

Other things have been a bit hectic over the past two months.  I’ve had numerous doctor appointments with no end in sight yet.  It started with a trip to a cardiologist, which was a first for me.  I mainly went for peace of mind and not because I was having symptoms.  Of course with type 1 diabetes, especially having it for a long time, the higher chance is there for heart issues.  I had an echo-cardiogram and a stress test which thankfully came back normal.  Although not without major anxiety.  I was having some periods of dizziness so that lead to a bunch of tests including a cat scan of my frontal bone and carotid artery test.  Luckily those were normal and the dizziness subsided.  I had a full blood panel completed which did not reveal any major health issues.  It did show that my A1c went up a bit but I’m hoping Apidra will help get that back down.  I found my very first primary doctor.  I do not actually see the need for one since I have a multitude of specialists and see my endocrinologist regularly.  However it seems for certain things, she may actually be helpful.  And I liked her so that’s a plus.

I’ve been dealing with leg pain when walking for years and years.  I had an NCV test done a few years ago which showed no signs of nerve damage.  I also had an arterial doppler done two years ago which showed no sign of any vascular abnormalities.  Along with the echo-cardiogram and stress test, my cardiologist ordered an ABI test, which tests for peripheral artery disease.  This test was inconclusive which in one way is a good thing since there was no definite sign of PAD.  My primary doctor ran blood work to check muscle enzyme levels.  Normal.  She referred me to a neurologist who I saw today for a consult.  She ordered an MRI and an EMG which I will have done in the coming weeks.  She thinks it is a mechanical issue which I’m not even really sure of what that means.  This chapter is to be continued.

I was diagnosed with gastroparesis a few years ago and IBS before that.  And they have not been playing nice lately 😦  I’m paying a visit to my gastroenterologist next week (she’s probably feeling left out!) to see if we need to explore other treatment options.  And praying she doesn’t want to send me for any tests!

While all of these issues may not be diabetes related, they have most certainly been explored more thoroughly and seriously because of it.  My head is spinning because of all the appointments and tests, and it’s hard not to get down from it all, I’m trying to remain positive.  Staying on top of my health is something within my control.  I am more than happy to endure endless tests and meetings with doctors if that means I can identify issues early and treat them accordingly.  Diabetes be damned.

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Accuracy. And Lots of Links.

Glucose meter accuracy is one thing that I feel very strongly about.  As everyone living with diabetes should.  I have been able to keep my A1c under 7% for the past 2+ years, something I have never done before in my 33 years with T1D.  But one of the things I need in order to be able to do that is an accurate glucose meter.

When using the OmniPod insulin pump, I mainly used the PDM as a glucose meter since it was built in – it uses Abbott Freestyle test strips.  I also have a One Touch Verio IQ meter which I posted about some time ago, really liking all of its features.  Even though it reads a bit higher compared to other meters for me, I’ve been using that as my main meter since shortly before I switched to the Tandem t:slim pump.

When Dexcom recently announced a software update to their G4 CGM product for more overall accurate results, of course I was thrilled.  I downloaded the update as soon as I could a few weeks ago.  Since the G4 was already very accurate for me (in terms of being in line with my fingersticks) even better accuracy sounded amazing!    Until it started reading off to my glucose meter and it’s been like that for the past few weeks, driving me crazy.  Has anyone else noticed this?

I received an email last week regarding the results of a J.D. Power customer satisfaction survey that noted Bayer ranks highest in overall satisfaction.  In the report, it also states “In addition to these results, Bayer recently presented data from two new analyses of previously published studies at the Diabetes Technology Society Annual Meeting 2014 that demonstrated the impressive accuracy of Bayer meters”.  This got me thinking to my own Bayer Contour Next Link USB meter that was tucked away.  I’ve tried it in the past and liked it and recall it being very close to my Dexcom readings.  So I decided to give it a try again.

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(In the above picture, the Dexcom had been calibrated with the Verio) I’ve done my share of meter comparisons and I don’t want to do that anymore.  Not only is each meter different, it stresses me out completely to do this.  So I’d rather not drive myself crazy if I can help it 🙂

Since Friday evening, there is definitely a notable difference of having readings much closer to my Dexcom than the Verio has had recently.  All I want is a meter and CGM I can trust for accuracy and consistency.  Since I already trust the Dexcom after 6 years of use, I need a glucose meter that will give me the same experience.  My diabetes management cannot be at its best without it.

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 (While I have mentioned specific glucose meter brands in my post, I am in no way bad mouthing any of them.  Everyone’s experiences vary and I am only writing about my own.) 

Some Updates.

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!

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(image credit goes to the internet)

New Doc Update.

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.

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End of the year. Already?

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”.

My new angel =)

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.

Current pod vs. New pod

Current pod vs New pod2

New pod compared to fruit size

New pod and PDM

(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.

Holding on to a Good Thing.

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.

Diabetes History.

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.