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