All posts by Stacey D.

Time Flies.

Hello.

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!

 

No Joke.

“Am I having a heart attack?” I asked the assistant at my cardiologist’s office as she was reading my EKG results.  Then I broke down sobbing.  Again.

I have dealt with some anxiety in the past but nothing like this.  And it seems like it was from a whirlwind of events.  Let me take you back to before that moment in the doctor’s office.

A few weeks ago, a close family member was seriously ill unexpectedly.  Thankfully he is better now.  However those couple of weeks were very worrisome for us.  My husband also had a cardiac procedure.  It was scheduled and fairly routine but it was at the same time as the other family member was in the hospital.  And it took 6 hours which was not what was expected.  That day in the hospital was a long one.  We were there at 6am and I didn’t get home until about 8pm.  Foolishly I did not have anything to eat or drink that whole day.  My BG were pretty good, even dropping low at one point in the afternoon.  When I got home that night, leaving my husband in the overnight cardiac unit to recover, I realized I should’ve eaten something.  Or drank something.  But I honestly do not think I could’ve stomached anything.  I checked ketones and of course they were moderate.  I drank a lot of water and forced myself to eat what I could.  They were lower before I tried to get some sleep.

The next morning, I felt horrible.  I knew it was from stress/anxiety. I made sure to check ketones again – they were just about negative and I ate a little breakfast and kept up on water intake.  I went to the hospital to pick up my husband as he was being discharged that day.  After I was there for a little while, I checked my BG and it was elevated.  Something made me take my ketone meter with me (I do not normally carry it with me) so checked those and they were high.  I don’t remember having high ketones in a very long time.  I started drinking water like a crazy person even though I knew in the back of my mind that may not be enough.  After a little while, I re-checked and the ketones were higher, not lower.  My heart sank.  I called my endo’s office, knowing full well what they were going to tell me, but I called anyway.  Sure enough they told me to get to the ER.  Fortunately (?) I was already in the hospital so it was a very short trip there.  It turned out I was in mild DKA but fortunately I caught it early and they were able to treat me with fluids and released about 12 hours later.  In 35 years with Type 1 diabetes, I have never been in DKA.  Needless to say I was scared as hell for a few days and drank more water than ever before.  And cried.  A lot.

The next few days were spent worrying about myself, my husband and also our other family member.  I kept getting this feeling in my chest, not pain or pressure, more like a knot or something.  It was hard to explain.  It would come in waves and that would get me panicking that something was wrong with me.  There were times that my heart would start racing.  Then that morning, where this post started, I knew I had to get checked out.  I seriously thought I was having a heart attack.  After some back and forth in my mind of where to go, I decided to call my cardiologist.  They were able to squeeze me in so I asked a friend of mine to bring me.  I was not having a heart attack.  At all.  My heart rate was through the roof  but it was all from anxiety.  She ordered me a 24 hour holter monitor just to be sure and sure enough my heart is fine.  While I was seriously thankful that I did not have a heart attack and nothing seems wrong with my heart, I could not believe that I felt so physically bad from anxiety.

I’ve been doing a lot of soul searching lately.  I have a lot to work on.  I’m being treated for the anxiety and I’m happy to say that I’ve been feeling a lot better.  There was a lot going around social media recently with This Is Us having an episode that showed a character having a panic attack.   It’s no joke.

Long Time No See.

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.

World Diabetes Day Giveaway Winners!

Thank you to those who commented to enter my giveaway!  It is currently after 5pm on World Diabetes Day so here are the winners.  (I randomly chose three numbers between 1 and 9 for the number of comments and the prizes were in the order listed in my post).

  
The winner of a copy of Daniele’s new book is Karen.

The winner of the blue Prikkedief supply case is Melody.

The winner of the pink Prikkedief supply case is Andrea.

I would appreciate if the winners could send me an email (staceydblog@gmail.com) with your mailing address.  

Cograts and enjoy your new goodies 🙂

World Diabetes Day Giveaway. 

Hi! Yup I’m still around 🙂 Things have been hectic around here lately but I’m still alive & kicking! 

Since World Diabetes Day is just two days away, I couldn’t think of a better time to give some things to my readers. In honor of the day on Saturday (by midnight), I will randomly choose three people who have left a comment on this post, to win one of the below items. 

 A copy of the new book by the wonderful Daniele, the Diabetes Dominator.  I just started reading it myself, but I’m already sure it’s going to be a great read 🙂 

One of two diabetes supply cases from Prikkedief. One is blue with a gold zipper and one is pink with the same color zipper. (The picture of the inside is just for reference – they are both the same on the inside).   

    
 

All you have to do is leave a comment here. Unfortunately you won’t know which you could be selected for, but they’re all great wins!  

Good luck and happy world diabetes day 🙂 

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.

IMG_8089

Gentler Testing.

As of today, I have done approximately 48,836 blood glucose checks.  That is an estimate based on the 33+ years I have had type 1 diabetes, checking on a low estimate of 4 times a day.  The past number of years I have checked daily many more times than that however I wanted to take into consideration the first couple of years not having a glucose meter to check with or the number of years I unfortunately checked less than that.  So that’s the number I calculated and I’m sticking to it 🙂

It’s no wonder my fingertips are a mess!  I cannot tell you how often I need to re-stick myself in order to get blood from my fingertip.  My fingers are marked with scars and are hard to the touch.  It may sound gross but it comes with the territory.  When the team at Genteel reached out to me, asking if I’d like to try their lancing device, of course I said yes.  Why wouldn’t I want to see if there is a gentler-on-my-fingertips way to check my BG?

My very first impressions when receiving the Genteel device was that it was pretty (of course I got the princess pink).  And big.  But those were just based on how it looked and nothing yet on how it works.  After reading the material on how to use it – it comes with various contact tips for different depths of penetration so I chose the one I thought best suited for my fingers – I gave it a try.  To my surprise, it didn’t hurt at all!  You can also use the Genteel to test on other areas, not just your fingertips.  I may be a creature of habit (a 30 year habit) so I haven’t branched out to other areas.  But I may give it a try at some point 😉  You can also use multiple types of lancets with this device which is a great feature since it doesn’t limit you to just one particular type.

Genteel

Overall the device is comfortable for your fingers.  It also comes in various colors (yes I do like “pretty” diabetes devices and accessories.  And choices.) and the stickers are a cute feature for kids to dress theirs up.  I even put a sticker on mine 🙂  One thing I honestly didn’t love about it is that it’s pretty bulky.  However comfort should precede looks if it’s an important enough feature.  Your diabetes may vary of course.

The great team over at Genteel (https://www.mygenteel.com/) have provided a code to be used for readers here, for $10 off the purchase of your own Genteel lancing device.  The code to use during purchase is “stacey10off”.  Keep in mind they have a 120 day money back guarantee in case you’re concerned about buying something you haven’t tried before.

After all these years of fingersticks, I actually never knew this (from Genteel’s website) “All lancing devices on the market today mainly rely on extracting blood from the fingertips, because they are the primary area where blood capillaries are closest to the surface of the skin. Unfortunately, they also have the most abundant supply of pain nerves.”  See, it’s never too late to learn!

Top of The World.

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.

IMG_7045

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.

IMG_7095

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.

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.

IMG_6578

(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.

IMG_6612 

 (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.) 

Another Year.

I know I can’t be the only one who is wondering where on earth 2014 went.  I seriously feel like it just began!  It wasn’t a great year for me but it wasn’t a completely horrible one either.  I still have much to be thankful for and look forward to in the new year.

One thing I am NOT looking forward to is a decrease in my health insurance benefits.  Beginning on January 1st, my coverage will no longer be 100% and I will also have a deductible for the very first time in my 16 year career.  While this may seem like the norm to many, and I am completely aware of that, it is a big change for me.  With that in mind, I made a decision a couple of months ago to change insulin pumps.  I was using the OmniPod for over two and a half years.  I loved it.  Had few issues and really loved being tubeless.  However, the cost for my insurance for a 3 month supply of pods is well over $1,000 more than traditional infusion sets for a tubed pump.  In trying to budget medical expenses and cut where I can, I decided to forgo my OmniPod for a tubed insulin pump.  I have an Animas Ping that is still under warranty but I don’t love it (it is the pump I used before switching to the pods).  I was using it for a few weeks and disliking the average 180 units of insulin per reservoir, the scrolling,  the battery changing and associated rewind and priming necessary with each change.  Since I was always interested in the Tandem t:slim, I decided to take the plunge.  It was an investment I decided to make out of my own pocket and since I couldn’t get a trial with one, I took comfort in their 30 day return policy.  However it has been about 2 months since I began using it and couldn’t be happier with it!

IMG_6199

I set it up myself (and I do not suggest every person doing this) and it literally took about 10 minutes.  The priming takes a bit longer compared to other pumps but that is not a deal breaker for me.  I knew the touch screen was going to make operating it easier but I didn’t realize just how much.  I wasn’t sure how I was going to like having to charge it.  But this battery lasts forever!  And charges really quickly!  Other electronic device makers should take note!  I was using Apidra when I first started with the t:slim with no apparent issues.  However my insurance decided to change that for me as well and stop covering it beginning January 1st.  I asked my CDE for a sample of Novolog (the only short acting insulin my insurance will now cover) to see if it worked well for me.  It does so I switched that too.  All in all it’s been a good transition and I actually don’t miss my OmniPod as much as I thought I would.

My last endocrinologist appointment went ok.  It was rather short lived since she was called out for a consultation with another doctor but she did say I was easy 🙂  My A1c is stable and the rest of my blood and urine work were all normal, thankfully.  I have an appointment for some bladder test that may reveal another complication but more on that next month.  My last retina specialist appointment went well and showed no evidence of macular edema or subretinal fluid which was music to my ears!  That means my retinopathy has been stable for over 3 years thanks to Lucentis.

December 24th marked 33 years of T1D for me.  It’s hard to believe that much time has gone by but it came with very mixed emotions.  Over the past few years I’ve had a few things start to turn up which get me down from time to time but overall I’m still doing well and am very grateful for that.  And that is what I need to concentrate on.  To keep it that way 🙂

I want to wish all of my readers and friends very happy holidays.  I wish you all a healthy and happy new year.