Wednesday, January 28, 2015

Hello Medtronic My old friend

Note to readers - I originally wrote this on a plane trip last spring and thought that it was lost forever - I believe that this is a very important post and while Insulet Corporation may have addressed the technical problems from last year - that was only half the story.  I would have put up with a lot of problems if their customer service had treated me differently.  That said - I have 3 boxes of PODs that I am giving away (last chance Daniel) if anybody wants them.

and now the little treasure that I discovered today!  Enjoy!


If any of you have been in a relationship and really wanted to make it work in spite of what at first may have been a few little "problems" maybe even more of an inconvenience at first that then eventually morphs into irreconcilable differences and the inevitable parting of ways that leave you a bit sad at first until you realize that in spite of the perceived benefits of the relationship, the fact that it ended ultimately leaves you feeling like you came out better in the end,,,,, my story with the OmniPod is very much like that.
a couple of weeks ago, I used my last OmniPod, NO, I STILL HAVE SOME, but I got stood up for the last time.  I was in Bloomington, IN coaching my Little 500 bicycle team and a pod that I had started just a few hours before alarmed as we were finishing up the core section of our workout.
Needless to say, I had a busy day on my schedule and had a planned meeting with about a 15 minute buffer of time to get there back in Indianapolis.
So I made an unplanned, stop at my house on the way to my meeting, dug out my Medtronic Pump, put a battery in it, filled a cartridge, inserted a site and ..... it fired right up and has been working absolutely like a champ ever since.

I had written what I thought was a truly inspired post about the entire experience and why I am no longer pumping tubelessly when I was on a plane to Orange County, CA last week, It somehow got eaten by my Ipad, so this is my feeble attempt to fuse this back together with an earlier blog that I started on the subject.

Below is the rest of the story, but I felt that all of you deserved to know that I truly was in love with my OmniPod and the freedom it gave me at one point, and I am so truly devastated that Insulet Corporation has let one of it's staunchest supporters (me) down in such a monumental way :(


Procedure Every time you change, which should be 3 days, quite annoying if your 3 day usage window turns into 8 hours or less

So my saga with the "New Generation" POD continues.  Insulet continues to act like they are not having a problem. (I guess that means that I am the problem).  Funny though, I met a gentleman at the Monumental Marathon Expo at the JDRF booth I was working and he saw my POD and asked me if it was the new one and how I liked it?

I told him I liked most of the features, with the exception of how the PDM is a lot less user friendly, "In the name of Safety", more on that in a minute.  But I asked him why he asked?  He told me that he had been suffering a 1 in 3 failure rate just like I had. 

To be fair, the failure rate has significantly improved on my latest batch, but is still much higher than I think is acceptable with a medical device. More like 1 in 4 now.

In fact I was recently in Florida for a coaching clinic and took 2 PODs with me for a 3 day event with the idea that I would have to change once and I would have 1 POD for back up. Seemed like a great plan to me until I changed PODs the night I got there and the new POD failed less than 8 hours later.

I call Insulet, explain the situation, they told me that they are back to picking these up (kind of a misnomer and now I have to carry it and keep track of it back home from Florida...fantastic... not to mention having to make a special trip to a Fed Ex box to drop it off,,,, but WTH ... I have all kinds of extra time with nothing to do but jack with my Omni Pod)

I would like to take this opportunity to point out what delivery systems that I have used in 40 years with type 1 diabetes that were more reliable than this Insulet product, just to be fair..... every system I have ever used including the old Omni Pod which still failed more often than I really thought it should, but was much better than this one and yes #Insulet, I DO PINCH UP, I have lean body composition and I have had failures in every single insertion location, buttocks, thigh, back of the arm and back (I never wear it on my stomach) you would think that they could keep that sort of thing on record, but then again as I mentioned before, I have all the time in the world to drop everything, call Insulet, answer the same old questions, give them all the information and then take the defective POD to Fed Ex and drop it off (if they are going to make me send it back, why do I need to give them the Lot and serial #s over the phone?)
The rep that I talked to seemed very nice, but I expressed how I was very dissatisfied with my "new Omni Pod at this point and was considering alternatives. I was asked if I would like to escalate this to management, which I did.  That was last Friday morning at 8am Eastern Time........7 days later and in typical Insulet fashion....NO RETURNED PHONE CALL WHEN THEY OFFERED!!  Really? Glad you people at Insulet value me as a customer of 2 years that is not going to make it to 3.  If this is how you are treating all of your customers and depending on the "Status Quo Bias" to carry you through, good luck with that.

Yes this is getting real old and I have gone from a champion for the Omni Pod as a great medical device to a hater who is considering going back to shots, or at least a tube style pump system. 

Cutting to the chase, I finally decided that not knowing if a POD was going to last 4 hours or 3 days galvanized me into action so I called and cancelled my automatic re-order.  When asked why I was cancelling my response was , " I have lost all faith in this product and the company."  Didn't seem to ruffle their feathers or prompt a response. 
Fine, I put down the phone thinking that was that.  (this was the week before thanksgiving Nov 25 I believe.  Then on Dec 5 (10 days later) I get an email notifying me that my next shipment was on the way.

OF COURSE... It was after hours for Insulet of course by the time I see this and so I go to their website to find an email to report this transgression.  Naturally there is nothing that matches up with shipping, complaints, etc... So I email their PR dept a sternly worded email, as follows:
You do not offer an email for dissatisfied customers - I am sure that you have quite a few at this point if my experience in the last few months is any indication.
You can count me in that number in fact so much that I will go back to shots before I will use the POD again.
I have wasted way to many hours on the phone with customer service due to PODs failing since going to the new POD. Not to mention insulin (I know that I can waste more of my time writing letters and chasing down receipts to get that reimbursed - now I am compelled to waste more time because I am being shipped more PODs since I canceled my auto ship last week.)  OMG you are sending me unreliable product and now you guys can't even handle a simple cancelation?
I have left messages on 5 occasions now and am yet to ever get a call back, I'm sure that you can imagine my frustration with this. (includes 2 requests to speak to someone in management - obviously they couldn't be bothered)
Your product is has become unreliable in my eyes, your company seems to not care about this unreliability problem.
I do not want another 3 boxes of this junk (25 - 30% failure by my count are you kidding me)
I used to be a huge supporter with the old product and talked it up in the T1D community and convinced a lot of people over the last 2 years to give it a go, but now I am totally disgusted with your company and this horrible product.
I need this shipment either diverted or picked up after it gets to me.  BTW I am also tired of making extra trips to the FedEx box to return this failed junk.(I am in the musical import business and if we had any product that had this high of a failure rate, it would be discontinued immediately) Your company has wasted way too much of my time.
yes, I am very upset
Michael Schwab
Believe it or not, I actually got a follow up call,,, the next day even.  The gentleman that called was apologetic and then gave me a number to call for FedEx, should they deliver and not offer me an opportunity to refuse this package and tells me that "I can schedule a pickup with FedEx & they will come get the package" 
So I call the number provided by the helpful gentleman today and am told that they can "schedule a pick up" no surprise.  After wading through the Fed Ex maze of phone menus no pick up.  I'm back on the phone with Insulet, wading through their phone menu, only to be told, that I now have to spend more of my time returning a package that was not supposed to come to me in the first place.
The quick list of what happened
  • Insulet switched me over to the new Improved version of the OmniPod back in June of 2013 - it's 33% smaller (the only advantage) the PDM is changed so that I have to verify my identity every time I check my blood glucose.  Nice to have one more step if I am already low and trying to figure out what action to take.  I realize that if I am in a room full of OmniPod users that this would be a handy feature, to insure that I didn't get my PDM mixed up.  Great idea geniuses
  • Speaking of great new features - this new PDM is just packed full of them. When I change a POD, it give me 2 extra steps in the auto insert process and then reminds me to check my BG an hour later even if
    • I just checked it 59 minute in
    • I just inserted a test strip to check my BG
      • So I insert my test strip
      • confirm my identity
      • cancel the reminder
      • let the test strip spool up and auto code
      • then I can finally put my blood on the strip - nice to have all these steps if I feel low to begin with
  • Immediately on switching over to the new system, I start experiencing a high rate of failure. (between 25 & 30% is my best guess - but let's say it's only 1 in 10 just for argument's sake) I sell inexpensive imported musical gear for a living and have for almost 20 years... just like these Made in China OmniPods.... If I had for example a $15 retail item that had a 10% defect ratio, we would be discontinuing that product.  That's just a musical accessory and we are talking about a medical device here for the love of God! 
  • You try jamming a paper clip in this thing to stop the alarm when it fails,,,PITA
  • When I call, I have a long wait on the phone "due to the high demand for the new smaller, less dependable OmniPod" I've said before, this volume is due to problems.  How about a little less hype and some more transparency.
  • Even though I have already been using POD products for 2 years, I have to go through this list of what I do when I put a new one on.  As if they can't keep these answers in my file and have it clicked off on the screen that I have already answered all of these questions correctly.  I guess they figure that after they have already wasted a bunch of my time a few more minutes won't matter. They also act as if they cannot see all of the failures I have had with their product.
  • If you don't want to wait for an hour on the phone, they will eventually give you the option of leaving a message for call back, that does not get returned
  • When you report your failed/alarmed POD you then get to read all of this tiny print to them on the phone
    • lot #
    • serial #
    • Alarm Code - after scrolling through the menu to find it - the reason that you should call in on every one and sit through the phone menu, so that you can find that alarm code and make sure you get the right one matched with the correct POD
    • All of this seems reasonable, except that it is a PITA when you are trying to
      • go to bed
      • just waking up
      • trying to get to work
      • trying to make it to any activity at all
      • doing it mostly when it is very inconvenient
    • As if that is not enough, they then will frequently want the POD back and so you must hang on to the offending POD until they can send you a return kit - I had one that went south while I was in Florida - not only cutting my margin for defective PODs but then I had to keep track of it all the way home and I think  TSA might have snatched it because it disappeared (Sorry TSA if you were not to blame for this and FYI, I would rather deal with TSA any day of the week over Insulet)
  • Finally fed up and canceled any future deliveries of PODs only to have them ship 10 days after I canceled them.  The lady I talked to today said that it really is canceled this time... we'll see. So unacceptable failure with substandard customer service, definitely a company that I want to deal with in the treatment of my T1D.
  • Just to let you know how fed up I am with Insulet, I had 2 more PODs fail in the week following my cancellation and decided that It was no longer worth my time to deal with these fools. So I didn't even bother calling and reporting this.  Never the less, I still have to take the Un-ordered box of PODs to a Fed Ex Drop Box and I still had to waste another large chunk of my time dealing with a problem caused by Insulet Corporation and their employees.

How exactly am I supposed to do this with a POD attached to the back of my arm?

Sorry this has turned into a bit of a novella, but I just don't think friends should let friends use OmniPod.

I would like to  request that any of you who read this, please share it with your Type 1 friends so that they do not make the mistake that I did of attempting to work with Insulet Corporation, the makers of OmniPod. This company has problems that go much deeper than producing an unreliable product and people should be warned!


Friday, October 18, 2013

Ok so last time I promised to tell you about how I got cured, but first let me tell you about the affliction.

In December of 2007 I was diagnosed with thyroidism, low thyroid to be specific.  The common way to screen for this is to look for elevated levels of TSH (thyroid stimulating hormone - produced by the pituitary gland)  read all about it at Web MD

So I had apparently had a mildly elevated TSH for a number of years but in December 2007 my Endocrinologist decided it was elevated enough that we needed to do something about it.  Turns out I was symptomatic for low thyroid as well.  Cold all the time (just like my mother - I thought it was hereditary) exercising while consuming a minimum amount of calories, but seemed like I had to be very careful in order to not gain weight, tired all the time, etc....

I began taking Levothyroxin (generic for Synthroid) things were going fine with the meds, but I started with a relatively small dose 75microgram but in the course of a few years increased to double that. Like anything else people react differently and apparently I am in the minority that does not tolerate this drug very well.

The first thing that I noticed happened in 2009, I started getting a lot of episodes of leg cramps.  It started as night time calf cramps and back of the leg cramps after sessions of hard riding on my bike and by the time I did the Death Valley ride that year progressed into serious whole leg cramping while I was climbing Jubilee pass near the top.

I mistakenly thought that this problem would go away when I finished the climb, but it turns out that I had horrible cramping in the largest muscles in my legs all the way back to Furnace Creek ranch (about 52 miles)  When I finished the ride, I thought that this would be the end of it, however 4 hours later, I was in my room laying down for bed when they came back much worse than before.  I was screaming bloody murder they were so severe.  I thought my legs were going to break and I went into mild shock.  (this was when I found out that you could kill someone at the Furnace Creek ranch, make a lot of noise doing it and no one would realize or hear - I screamed very loud for what seemed like a long time)

General consensus from most of the people that I rode with was that I rode to hard, hadn't trained enough, didn't hydrate well enough... nothing that really fit into my reality, but I had nothing else to go on.

These awful cramps became a normal part of any endurance ride that I did from that point forward and I tried everything short of quiting to make this stop.  The most popular theory was that I didn't hydrate enough.  In this time, I switched from Gatorade to various no carb electrolyte solutions and instead of one water and one sports drink, went to both bottles with sports drink and doubled the normal dose in each and still the cramps came after any 100 mile ride no matter how hard I rode.

Then in May of 2012 I was walking down the hall at work and broke my leg.  Really???? I may be old but not old enough for that.  Turns out that I have osteopedia and tests revealed that I have bone loss.  Immediately my doctor ordered tests for a bunch of maladies that I had no other symptom for other than bone loss.

Everything was coming up negative of course.  So, I'm at this JDRF ride and BBQ in Kentucky, the Kentucky Trifecta, and talking to this lady after the ride at the BBQ talking about my broken leg and how I had just got out of my boot, come to find out she has had the same issue I had with bone loss and it is a result of the meds she was taking which happened to be the same as mine.

Problem solved, it should be an easy matter to get my Dr this information and get this situation resolved, right? Well it turns out it was not quite as easy as that, but eventually a year later after doing covert experimentation on my own, I discovered that stopping the levothyroxine, also stopped the cramping.  I didn't need any more convincing and with my last visit to my Dr convinced him that I was not going to take the levothyroxine any longer and so he prescribed Armour (good quality porcine desiccated thyroid from pigs not porcupines :) )

Ok, so talking about my cure!  I saw the doctor and started my new meds about a week before the JDRF Nashville TN Ride. 100 very hilly miles.  Fact is that I ended up with 109 miles and 7500 feet of climbing.  But I'm getting a little ahead of myself.

I started the new med immediately after leaving my Doctors office and the next day was low all day and couldn't seem to get my BG to stay up.  I've since noticed that the day after a hard ride, I am having to make new adjustments in how I manage my BG.  This is something that I have heard from a number of other T1D that do endurance sports and a frequent subject of the riding with T1D meetings at the JDRF rides.

So I get to Nashville and do this epic ride and guess what?  NO CRAMPS!! PERIOD!!  I rode as hard as I wanted to all day and went out walking around that night, not a single threat of a cramp while riding or latent cramps 4-6 hours later!!  Cured of cramps and very happy about it.  I even had another coach who overheard me talking about being able to turn on the power when I came to every hill who said that he could feel his hair being blown back whenever I did that! ..... he was kidding..... right?

I just visited my Doctor again last week and as you can imagine, he is thrilled that I am doing so well!  In fact I haven't felt this good in a very long time and I've been able to start loosing a few more pounds in pursuit of reaching that perfect weight for hill climbing!

Wednesday, October 9, 2013

The Problem with Pod - final chapter - Of Pumps and Pods

In 1992 I started teaching myself how to play guitar.

When I was a kid, I had wanted to play drums, but my parents got me guitar lessons instead. (my little sister got to play drums).  I hated guitar, probably because it wasn't my idea to play and so I never learned how to play.

I must have been about 1996 that I started my first band with my ex wife.  We played Christian Music in Churches, playing other people's music and eventually decided to do something different with an outreach bent. LivingDead the Christian Goth band was born.  We did mostly original stuff with some secular covers, such as White Rabbit (Jefferson Airplane) and In the Name of Love (U2).  It was quite a show and we got to dress up. (I am planning to post some exclusive video to YouTube in the near, but be forewarned that it is very bad :))  In spite of that, we recorded a couple of CDs and actually managed to get some Radio airplay on specialty shows around the country.

Managing my T1D was sometimes difficult when we were performing as I was still on Lente and having to fuel to my peaks. In addition, we always tried to be active on stage, but fortunately I was able to deal with any lows on stage while avoiding catastrophe!

 At this time we were playing live somewhere in the neighborhood of 50 times a year.  Naturally we were getting better all the time and ended up in this Midwest Band tournament in Minneapolis, MN.  We booked some University of Wisconsin gigs, Christian Coffee houses and a few Churches along the way as we went back and forth from Indy to the Frozen wastelands of Minnisota that winter.

In December of 1998, after yet another trip to the twin cities, we broke up that band and started another going in a different direction (Alternative Rock) and with a new band name, Blaq Lily.

Jenny (now called Arminta - her middle name) and I started out playing open mics as a duet and immediately garnered some attention!

listen to Blaq Lily songs here

or on ITunes

We met another musician at this time Jennifer Carlson, (a talented harpist and amazing soprano vocalist) at a park gig in Broad Ripple, IN.  She asked about jamming with us and soon was a part of our ensemble! (you can find Jen currently performing with Alair)

Jenny and I had released the above self titled album in 1999 and attracted the attention of a producer in Nashville, TN (Will Smith Tyler Music Group) who invited us to Nashville to do some test recordings at the Sound Emporium (studio that Trisha Yearwood, REM, etc.. had recorded a number of hit songs)  In addition to the 3 of us, he brought in some backing musicians that had credentials with Garth Brooks, Lyle Lovett and the Grand Ole Opry! The songs that we cut in Nashville helped us to attract high quality musicians and before long we were playing for pay about 150 times a year.

Jumping ahead a few drummers and bass players. In 2001 we did a call for drummers and in the process auditioned a T1D drummer., Greg Mrakich.
we discriminated against him in that audition because the consensus of the band was that we did not need another diabetic in the band and hired another guy instead.

But Greg kept coming to shows and stayed in touch with us.  So when the guy we had hired instead (along with most of the rest of the band) quit after our 2002 CD release, we hired Greg.  This turned out to be another turning point for me because up until this time, I could count less than 10 T1Ds that I had met in my entire life.  Greg was on a pump and was sort of a pump evangelist.  He eventually sold me on the idea of giving up the needle and I got my first pump, a Cosmo (now out of business)

I switched to a Medtronic, great pump with a lot of great features and it had CGM capability (not
such a slick set up)  The needles for the Continuous Glucose Monitor sensor are/were huge ( picture borrowed from diabetesdaily ) and seemed to take about 24 hours to calibrate properly, for 3 total days between changes. Plus if you had to be away from the pump for any length of time, like for a swim workout, it totally messed up the reliability of the calibration.   That said, it was a helpful thing when it was working properly and I am now looking at the Dexcom CGM as a result.  I have a number of friends using it, have been to an educational session and by all accounts, it looks like this is the CGM to have right now.  I will write about it when I get it. 
After using the Dexcom for a number of years, I started noticing this new comer in the pump market.  They had a tubeless pump.  I was intriqued by this design for a number of reasons.
  1. I was constantly catching my tubing on door knobs and ripping out my infusion sets, forgetting that I was attached when I would wake up in the morning and slamming my pump to the floor when I would reach the end of my tether.
  2. this POD pump attaches directly to the infusion site in a unit about half the size of an Iphone and you don't have to take it off for showers.  Nice since I would occasionally forget to plug my little R2D2 unit back in and get a high BG as a result
  3. I can swim with it on
  4. I don't have to give up valuable pocket space in my cycling jersey
  5. It doesn't bounce around on my waist when I run
  6. I can conveniently rotate infusion sites because I don't have to route a tube to my leg, butt, lower back or tricep
  7. Dressing up is easy, because - I don't have to route a tube to keep access to my pump as I have a PDM (Personal Diabetes Machine) that controls my pump wirelessly and doubles as a Glucometer.
  8. pretty easy to travel with, don't have to take as many supplies
  9. It is inconspicuous enough that I frequently forget that I have it on (the purpose of the sample PODs that they hand out at T1D events
The down side includes the following
  1. I frequently forget that I have it on and rip it off when changing cloths.
  2. It is often difficult to gauge how much insulin to load it with resulting in wasted POD time or Insulin waste
  3. I sometimes run it into door frames and rip it off.  (when I rip this thing off, I am not ripping it loose from my skin, but am ripping the sticky thing in half that the POD is attached to) that said it does stick out a little way.
  4. The PDM is enormous in my book and difficult to mange as it takes up room in my Jersey pocket, suit pockets
  5. If I am due to run out of insulin during the day, I can not pre load a POD, like I could a cartridge with my Medtronic.  But have to carry an entire vial of insulin with me. Totally inconvenient for a long bike ride on a hot day.
  6. I used to have a second infusion site ready to go in case I had a site failure, now I have to carry a syringe to pull insulin if the POD fails
  7. The carry case that Insulet provides for the PDM sucks and is little more than a rubber sleeve. I don't know if those guys are aware of this, but a Glucose monitor in order to be effective has to have a finger pricker to get some blood and test strips to ...... test with, and you have to carry all of this stuff with you everywhere you go.
    1. Even though the good people at Insulet seem ignorant of this little fact, they did spend a considerable amount of energy in updating the software/features in my new PDM so that it will not let me
      1. use my PDM test my blood with out identifying that I am indeed who it says I am. Really nice if I am trying to test and my BG is low to begin with - to much trouble to ad a feature allowing those of us who are not surrounded in our home with other T1Ds to turn this feature off. 
      2. adding in a bunch more queries when I am changing my POD out so that I can not speed through the process that I have to repeat every 3 days - would be nice to be able to turn this off after the first couple of months, it just annoys me especially when my POD fails prematurely and I have to do this in the middle of the night and just want to get back to sleep  ain't nobody got time for that
  8. Insulet also put a considerable amount of effort into reducing the size of the actual POD by 25% - this is actually quite nice and I am not finding my self running my POD into door frames or catching it when I change cloths near like the old one... however this new POD has given me a bit of an annoying problem
    1. it has failed on me an unusual amount of times in my first batch. Out of 30 I have had 8 failures (coded with no explanation except for one occlusion which Insulet says they do not cover??? This happens sometimes during normal operation and I never ever had this particular problem with Medtronic.
    2. Wait time to talk to someone at Insulet have been exceedingly long.  I have been offered the opportunity to leave messages on 2 occasions which I did and did not receive a call back, so 3 days later called them again for the hour long wait
    3. this problem has wasted a considerable amount of my insulin, not to mention lost sleep and the inconvenience when it happened on a bike ride with 60 miles left to go. If I jump through enough hoops they apparently will condescend to compensate me for my wasted Insulin.  But it seems like a ridiculous amount of effort they want me to put in with an undeterminable outcome. 
    4. Every time I call the company, it feels like old times at the doctors office.  I am or must be doing something to cause these failures.  They always talk to me like I am a first time caller and instruct me in the same things over and over that I have already verified that I am doing.  Yes, I do pinch up when I change PODs for the insertion process..... don't you guys keep some sort of records??? should I really have to tell  you that I am calling in right now about once per week. 
  9. Bottom line, I have loved my POD but am not currently loving the company. Their customer service is very poor.  Don't get me wrong, they eventually make it right, but all of the hoops and attitude that I have to jump through to get it done really leave a foul flavor in my mouth about the company.  So don't be surprised if I post a review of the Tandem before the end of the year.  All the things that I don't like about tubing might be ok compared to this.
Stepping off soap box and calming down :)  Now you all know the problem with POD.

Tune in Next time when I talk about my recent Cure!!!

Peace Love and Happiness

Sunday, October 6, 2013

The Problem with Pod - part 2 Developing as a Diabetic

I went to my 35th high school reunion recently and it was great to see all of the people that I shared some of my most formative years with and yet as good of friends as we were back in the day have not seen each other for 20 years in most cases.

What surprised me (and always surprises me) was the fact that what most of them remember most about me revolves around my T1D.  I was surprised when a guy I played football with remembered me getting to have candy bars and cokes during our freshman football year because I was having lows.  (funny thing about that is I was not diagnosed until 4 months after the season ended. :)

I finally convinced him that he must have been remembering our sophomore year, but he went on to share with me that he was sure that I was faking, just to get out of practice (not to mention get candy bars and coke).  It brought back the memory to me of how I always felt like people thought I was faking and that I should just man up and do what had to be done.

Frequently this involved denial of low blood sugars.  In other words, I would try to tough it out when my BG (blood Glucose) was low and try to act like it wasn't happening. This is a problem that I still deal with today. Because I was paranoid about people thinking that I was making it up.  Ad to this that my parents did not seem to realize that a low BG was immediate danger that could result in convulsions, unconsciousness, possibly brain damage and death!

I remember one day that my dad and I were out on the farm doing some work and I told him I was having a reaction (we called low BG and insulin reaction in those days) and he told me just to hang on another half hour and we would head back to the truck.  I know it seems unbelievable, but he just didn't know, because that wasn't something that the doctors had told my parents that they needed to be worried about.  They needed to be concerned about high blood sugar because that could cause "COMPLICATIONs" (whatever those were)

At this time, my only feedback on my BG was a urine test that told me if I was high enough to spill sugar or when they took a tube of blood from me at the Endo's office and told me the next day what my level had been.  So I have no idea how low I got in those days, but since I have been able to self test, the lowest I have had is "low" which means below 20 and I was still ambulatory, even though functioning at a very low level.  (if you are not aware, it is generally accepted that normal BG should be between 70 & 110, although I personally believe that a non diabetic with a 70 BG will be grouchy and may complain of a headache if they live there very long)

When I was diagnosed, it was not known that T1D was an autoimmune disease, so I had to endure people telling me that I was T1 because I had probably ate to much candy, etc... once again my fault. The same thing a lot of T2D people have to endure currently. (my money says that eventually the 2 diseases are going to be linked in a huge way - after all my Dad was diagnosed T2 in his 60s and my Older sister was diagnosed T1 at 50 - seems to be a coincidence that we have both types in my family)

But I digress,,, all of my high school peeps remember my T1 and have stories of me eating apples in the school hallway, getting orange juice for my "attacks" , winning the candy sales (likely eating all the candy as the cause of my disease :) - I'm actually quite adept at sales and while I ate a box or 2 that was strictly for medicinal purposes)

What most don't realize is that I had a remission in my teens where, I actually was completely off of insulin for several months (seems like this covered a football and wrestling season... hmmm) and was taking a very small dose for close to 2 years, less than 5 units per day. (a unit is 1/100 of a CC, a bottle of insulin contains a thousand units)  I really believe that a lot of this high sensitivity was due to the fact that I was very active.  Video games were not in vogue until I was in College and even then you had to go to an arcade and spend your quarters, so it was not something that you spent a lot of hours with.
But I cut and split firewood to supplement our family heating needs (which kept me busy year round), was constantly in sports and still had time to get into plenty of trouble. (another batch of stories that I will share in time)  So not a lot of sitting around time.

Skipping ahead so that all of my titles don't have to do with my Pod for the next year, I was mainly medicated by Lente insulin with bottles of NPH occasionally for the next 25 years.  If I remember right I settled in somewhere around 20-25 units per day.  I had also learned a trick from another T1D that I could use Regular for a booster when my sugar was high, to get it down quicker.

I need to interject here that when personal glucometers first became available, I started out checking my BG on a regular basis until I realized that it stressed me out and made my BG go high since there was nothing that I could do about whatever BG I had at the time, other than not eat.  I told my Dr about this (who mostly dealt with T2 patients and was met with skepticism) In your face Dr!!! we now are sure that stress can cause a spike in BG.

It must have been about 2001 or 2002 that I finally got medical insurance through work and got hooked up with my current Endo. He got me started on a regimine of Lantus (a basel long acting insulin with virtually no peaks) and Humalog (a Lily fast acting insulin, that allowed me to calculate my dose based on what I was eating)

This new treatment changed my life.  I went from 2 shots a day to more like 5-6 shots and began checking my BG many times a day as I could now do something about high BGs to correct.

Now People would ask how many shots I took per day and when I told them, I would get scolded or told that I must have gotten worse diabetes (this resulted in a lot of eye rolling on my part) I would try to explain to them that no, my diabetes was actually more manageable as a result of my new treatment, but you could see their eyes glaze over and they would go on knowing that "I was not taking care of myself"  (sigh)

But the unpredictable crushing lows were assuaged and life became a lot more manageable for me. Testing became a routine that was actually helpful in my control and my A1Cs were coming into line, in the low 6s.

When I graduated from Purdue in 1983 I was offered a job as an Industrial Engineer with a division of PR Mallory and flunked the physical because I was asked if I had any serious illness and asked if Type 1 Diabetes was serious.  The company doctor got with my doctor who of course doubted that my control was very good and asked me to submit to a new test that they had at the time (an A1C glycohemoglobin - a test that measures the attachment of glucose to red blood cells and gives  an approximate average of what your BG has been over the life of that cell - about 90-120 days) My A1C came back 7.2 (apparently a bad thing if I was type 2 but sort of the gold standard for type 1s these days) The 2 doctors agreed based on this result that I was not in good control and was basically, "a ticking time bomb" a time bomb that is still ticking 30 years later,,,,, I must have a much longer fuse than those 2 doctors thought. :)

Next Episode (final Pod title I promise)  Of Pumps and Pods

Monday, September 30, 2013

The Problem with Pod Part 1 - How it all began

Having been diagnosed with T1 diabetes (T1D) in 1974, I have seen a lot of changes in the way that I am able to treat and manage my diabetes. In this series, I am going to start at the beginning so that those of you who have not had this blessing can appreciate:
  1. the quality and ease of management available as we know it today (I'm not saying it's easy, just better)
  2. the advances we have had in our management as a result of organizations like JDRF (who recently changed their mission statement to include, Improving the lives of those living with T1 Diabetes)
  3. the benefits as well as pitfalls that I have experienced in my journey as advances have occurred and hopefully help you to at least be aware of the downside in advance
As I said before in March 1974 I was diagnosed T1D.  I was 13 years old a freshman at Roncalli HS in Indianapolis,IN and looking forward to spring break. I had been going to the bathroom a lot for a couple of weeks, was drinking a lot of fluids (Kool Aid by the gallon) and was urinating so frequently that I could not make it from the bus stop downtown after school to the gym 2 miles away with out having to find a place to relieve myself...... it was really bad and awkward.

This whole time, I was worried that I had a bladder infection because my older sister had recently had one and had to get a shot.  I was terrified of needles and did not tell my parents about my problem just because I didn't want to go to the doctor and get a shot!

Imagine my relief when I was able to get out of the doctors office and got out of there without a shot! My parents took me home packed a bag and we headed to Community east hospital.  I'm ridding along in the back seat of  our 1972 deuce and a quarter happy as a clam, I didn't get a shot (and believe me when I tell you that I had been really worried about that). This is the Friday and I had gone to the doctor after school and was really looking forward to that spring break.  I don't know why the suitcase didn't clue me that this was going to be an overnighter.  Turns out my whole spring break was to be spent in the hospital.

I get to Community and the nightmare begins.  My GP had just done a urine test and it came back Wish I could find a picture of this kit, it was something! This is what the doctors did in their office and this was to be the method that I used to manage my control for years to come.
bright orange.  In those days you got a neat little in vitro chemistry set complete with a test tube and eyedropper and you put a measured amount of urine with a measured amount of water, dropped a tablet and watched the magical reaction (the test tube got really hot when you did this).

So back to the nightmare, the first thing they do is draw blood (needles) then a little later, they give me a shot of insulin (I don't remember the details). It was about this time that I realized this was going to be a bit more long term than I had initially thought.

I learned a few things over the next few days
  1. Diabetes is incurable (still is, not much change there)
  2. I was going to get very familiar with a needle and was going to have to use it on myself :( 2 shots at day :(
  3. The insulin that they were putting me on was a relatively new product called Lente (now a discontinued product as of 2005)
  4. I was going to have to change the way I ate and had to learn about something called the exchange program
  5. If I took care of myself (whatever that means) I would not get complications (whatever those are)
  6. a bunch of other stuff like how to test my own urine for sugar, test for ketones, a little bit about lows and highs (BGs)
I had a roommate in the hospital that was an older guy who had started out managing his diabetes with diet but then ended up on insulin and was battling blindness due to "complications"

At the time I thought that I could take insulin orally but soon found out that the oral medication was for adults only and that "Juveniles" were always started on insulin. Knowing what I now know about the oral meds, this is a blessing indeed that it went that way for me.

This was all sort of scary to me, but on the other hand, I was a teenager and invulnerable at the time, so most of the worry stayed in the back of my mind and all I knew was that this was the worst spring break that I had ever had.

I got to leave the hospital in a week (just in time to go back to school) and I began to learn what it was like to live with T1D.

At the time it was taught that the lente insulin's action was very predictable and that it went off like a Swiss Watch, meaning that it would act stronger on my metabolism at some times than at others.  This is called a peak.  The modern charts that I am still able to dig up paint a bit of a different picture that fits a little closer to the reality that I lived in.

Modern charts for this tiype of insulin look something like this :
Starts 1–3 hoursPeaks 4–9 hoursEnds 14–20 hoursLows most likely between 4–16 hoursintermediate, less peaking, larger action
Quite a bit more reasonable that thinking if I took my shot at 8am I was going to hit a peak at 3pm and structuring everything that I did around that.

But that is exactly what I did for close to 25 years.  I now call that fueling to my insulin.  But I constantly had doctors telling me that I was doing something wrong when I would consistently get low BGs before noon as my insulin was not peaking until mid afternoon. (in their minds somewhere between 2 and 4pm based on an 8am shot.

Next time, my D life changes with new medicine.

Wednesday, March 27, 2013

Attack of the Abscessed Teeth

My wife will tell you that I am very hard headed about going to the doctor.

For a person with a chronic disease, this can be a problem, as it can cause complications that would not bother a normal human being.

For example, I broke my foot a couple of years ago while running, when I stepped on a frozen footprint.  The 3rd metatarsal snapped, but I could not fathom that such a small miss step could have actually broken a bone, let alone with such severity.
So I finished my run (had about 3 miles left) got up the next morning and ran another 3 miles and then decided that I had actually done something that would cause me to put my running on hold for a couple of weeks anyway.

Needless to say, I walked on it for 2 weeks before I finally listened to Melissa and went to the doctor..... not exactly how it happened.  What actually happened was that I had what I thought was a really bad ear infection and it was messing with my swimming, so I went to the Dr to get some anti-biotics, it was messing with my BG levels as well.

Short story is that my GP Dr Kenneth Young (a fine GP who has 2 siblings with T1 diabetes ) told me that I didn't actually have an ear infection (I had been to see him 3 times previous with the same complaint) but he somehow determined on this visit that it was actually an abscessed wisdom tooth. If I remember correctly, I gave him some more information on this trip that actually led him to that conclusion.

So I said, while I'm here Doc, could you take a look at my foot, my wife seems to think it needs a Dr's analysis.  He took one look and said, I think it's broken, but we need to get an Xray.  Which lead to the Xray tech full of concern, coming to me in the waiting room and asking, "You walked in here on this?" This was followed by a trip to the Ortho where they did more Xrays and I was asked repeatedly, "You walked in here on this?"  Finally culminating in the Ortho saying, "They tell me you walked in here on this with a shoe on it."  Diagnosis broken 3rd metatarsal, Dr said he say men my age all the time with this problem and that I needed to quit running. (similar to what my GP told me except he said "Diabetics" and the Ortho said, that since I am T1 he did not think it wise to reset, my now partially healed broken bone and that I should leave it displaced and not run ever again.

Naturally I didn't like this diagnosis, so I sought a 3rd opinion and was told, "I see this kind of injury in 18 year olds, run if you want."  So I did.  I ran 5ks galore, in fact everyday at lunch from my work.  I ran a 10k, a 15k and a 10k as part of an Olympic distance triathlon in St Petersburg, FL (have to do that one again some day)

So when I lined up for the Indianapolis Mini Marathon in May of that year, I was telling the guy next to me that I thought I was going to do a personal best.  (for me I was expecting an hour 35 -45) imagine my surprise when I felt something go snap in my foot 1/2 mile into the race. I broke 3 bones this time, but the good news is that they healed straight this time because I went right to the Dr.

What does all of this have to do with Abscessed teeth, you are likely wondering about now.  So the other part of the story is that, my dentist had told me probably 2 years prior that I needed to get those wisdom teeth taken out before they caused me problems.  Trouble was that I now know in retrospect, they were causing me problems with my ears, breathing and BG control.  They had apparently been abscessing off and on all of that time, so I should have taken care of it when the dentist first presented the issue to me instead of delaying until it was really a problem.

I went to the Oral Surgeon, where I learned that Oral surgery is not just where you talk about surgery as opposed to written surgery where you write about it.  They actually go in and rip stuff out by the roots.  Not how the Oral Surgeon phrased it but true!

So come to find out that my 2 year delay in the removal of these puppys has brought on an added complication, the nerve on the back molar on the upper left side of my jaw had possible nerve damage making it look like I could loose it as well.  The good news is that he was able to save my molar..... but just for a time and I was glad to get another 4 years of use out of that tooth. 

Getting rid of my wisdom teeth, made me feel like a new man!  I was swimming faster, breathing through my nose again, no longer was continually congested in my head and just had more energy overall.

Then a couple of weeks ago (maybe a bit longer) my BG levels started getting dicey.  Kind of like trying to ride a bronco into a coral.  Going high and low unpredictably.  (usually an internal stress indicator as I have found to be the case)  On Monday of this week 3/25/13 my BG went high and would not come down in spite of bolusing almost triple the amount of Humalog that I would normally I would normally use.

My sister fed me some Potato soup for supper and when I bit into a soft potato, I found the source of my high BGs.  I should mention at this point that this tooth had been bothering me on a mild level for at least a couple of weeks and Melissa had been nagging me to go to the dentist, but of course I was resistant and she was right.  The little episode with the potato soup plus the fact that the pain lasted all night convinced me to go to the Oral Surgeons office the next day.

$550 dollars and 4 hours later, I was one more tooth short of a mouthful.  But guess what!  I am already feeling better only a day after and have only taken one of the pain pills prescribed so far. Don't even need Aspirin and my BG is behaving more like I have come to expect it to behave.

The moral of this story is,,,,,, when your wife tells you to go to the Dr, don't be hard headed, just do it!

Saturday, March 23, 2013

Can't eat this?

I love it when people will say to me , "You can't eat this Michael because of you got the Diabetes."  My answer is always a snappy

"I can eat pretty much anything that will fit in my mouth that I can chew up and swallow!"

What they actually mean is that certain foods are not good for you when you got "The Bad Diabetes"!!

I have news for the world....  whether you have "The Bad Diabetes" or not, there are a lot of foods that are not in any of our best interest to consume.  In fact if people would only quit eating these foods, they would disappear from our food store shelves.  That is the way demand side economics works.

Here is the #fact.  If a food is bad for a diabetic (no matter what the variety) it is bad for someone without a chronic disease. i.e. calorie dense foods when consumed on a regular basis, chemicals, toxins (yes there are chemicals and toxins in our food supply) read any book on "natural nutrition" and they all identify this as a problem and there are a lot of long term studies that indicate the same i.e. "THe China Study"

This blog post is not intended to educate you about what you put in your mouth, it is only intended to make you think about it whether you have "THe Bad Diabetes" or not.

There are not 4 food groups, there is no food pyramid and we do not have cartoon creatures from the sun coming down to melt the polar ice caps. These are only marketing gimics.

Reality is that there are 3 food groups, protien, fat and carbohydrate

Protien is not a synonim for meat - it is described by the 8 essential amino acids that form a complete protien and are essential because the rest of the amino acids that we need to survive and build our bodies are derived from these 8.  Don't worry about how, your body already knows what to do with them.  You don't have to get all of them at the same source/food or even the same meal, but if you feel compelled and are on a plant based diet, you can get all 8 from Quinoa.  Don't know what it is, google it.  All I can say is it is delicious.

Carbohydrate is not synonomous with pasta and bread, although it can be found there.  This is the primary fuel source our bodies run on, particularly when the exertion is extreme.  It can be found in most things that we describe as food, but some foods are a lot more dense with them than others for example, ounce for ounce a snickers bar or pasta will have more than a grapefruit or an apple.
A little bit of research goes a long way for knowing these things, I have been counting carbs for years so I generally am very aware of the carb density of anything that goes over the lips and through the gums on it's way to my tummy.

Fat - this is what your body stores all of those extra carbs you consume and fail to burn.  It is also a food/fuel source and can be found in everything from whale blubber to avacados.  There are nutrients found in the fat that we consume that can not be found anywhere else (omega 3s for example)  Fat tastes good! That's right I love it in bacon, chocolate and guacamole (yum)  but it is very calorie dense, so unless you want to turn into a Beluga Whale yourself, these should be consumed in moderation relative to your activity level.

People are always concerned about burning fat and think that they can magically make it disappear from their bellys simply by doing situps or crunches.  The #fact is that even when we are in our most efficient fat burning modes.  In other words we are using stored fat as our primary food source, it still only is allocated from where our body decides to allocate it from.
I'm not sure why "our body does not check in with us to see which pocket of fat we want to burn from, but unfortunately, unless someone can figure out some mental gymnasic to gain control of this process, we are all going to have to  get low fat throughout our bodies to get those 6 pack abs, or perfectly proportioned thighs.

Bottom line, "YES I CAN EAT THAT!"  I just may not want to

All things in moderation my friends!