Updates.

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

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

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

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

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

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

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

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

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Finding Real Estate.

I’ve been using a portable pancreas (aka insulin pump) for seven and a half years now.  And the OmniPod for a little more than two years.  My favorite spot for putting pods or infusion sets is my abdomen.  However to prevent scar tissue from building up, I don’t want to use just my abdomen.  Even though I can rotate about 4 different areas of my abdomen comfortably with the pods, I don’t think that is enough rotation.  I’ve used my lower back and upper tush area as well but lately I’m finding the absorption isn’t consistently the same resulting in higher BG.  I’ve never been able to use my thighs for sites – the absorption there just plain sucks.  I’d love to think it’s because one part of my body is actually muscular, but if Kris Freeman can use his pecs for pods, I should just shut up 😉

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(photo credit goes to https://twitter.com/TeamFreebirdXC)

 

I think this is a common problem for insulin pump users.  My question is, how did you find a resolution?  I’m getting a little frustrated and don’t want this to turn into a huge issue if I can help it!

Diabetes Art Day 2014.

Happy Diabetes Art Day!  If I’ve learned anything from Diabetes Art Day over the past few years, it’s that I’m really not too creative.  And I’m okay with that!  Most of the time anyway 😉  Thank you so much to Lee Ann for creating this event – I really do love all the passion you put into it and seeing what everyone else creates.  I’d have to say my favorite form or art is photography.  Especially since I used this last year too!  Without further ado, here is my piece for 2014:

A world with diabetes is a world with numbers.

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Does Size Really Matter?

Or more specifically, does angle really matter?  I’m going on 2 years with OmniPod.  And I LOVE this insulin pump.  For its tubelessness, its PDM, its convenience and functionality.  Prior to OmniPod, I used straight infusion sets with Medtronic and Animas insulin pumps for about 5 years.  And never had issues with them.  I could count on one hand how many occlusions or failed infusion sets I had over that time period.  Even though my lowest A1c’s have been in the last 2 years, more recently, I am beginning to wonder if the angled set is as effective as I need it to be.   And the one unfortunate thing about the OmniPod, is that it doesn’t give a choice of cannula angle or length.

While I consider myself an educated PWD, I am not certain if the angle of infusion sets can really make a difference in insulin delivery.  But I imagine it could.  I’ve read that the angled sets are usually better for areas of less “meat”.  (Unfortunately I do not have to worry about that)  But does that mean the straight sets are better for areas of more “meat”?  Does anyone know?  I’d love to hear your thoughts/advice/opinions.

New Doc Update.

A few of you had asked me to keep them posted on my new endocrinologist story.  Which I appreciated.  And so here is an update.

I saw Dr. R last week.  Was it magical?  No.  Was it dreadful?  No.  Was it satisfactory?  Yes.  It was kind of strange to have to start from the very beginning of my diabetes life when giving her my complete history. But I had to and she updated my records with the information I gave her.  I of course included the minor complications I have been dealing with over the past couple of years.  She wasn’t surprised by this since I have been living with diabetes for over 30 years.  She asked if I was on an insulin pump and when I confirmed I was indeed on the OmniPod, she asked for the PDM right away to download.  Note: at my old practice, this information was only downloaded at my CDE appointments.  She inquired about my last A1c and how it has been generally speaking.  When I stated that since being on the Dexcom CGM, it has been pretty stable around the 7% mark, sometimes a bit lower, sometimes a bit higher, she asked for the Dexcom to be downloaded and was almost shocked why I didn’t give it to her upfront.  I explained that I was not used to having my devices downloaded at endo appointments.  I felt so silly!  We spoke about general endo issues as well including celiac.  When I was tested for celiac about 2 years ago, it wasn’t at the suggestion of my endo but at my own request.  I inquired how my visits would go in terms of seeing her and other staff in the practice, like a CDE for example, she said to her it was apparent that I did not need continued education so it would be quarterly visits to see her.  However I would have access to a CDE in the practice, one who I could contact for anything.  She ordered a bunch of blood work which was done in the in-office lab (plus!) and a urine analysis.  She requested I see her in three months when she will perform a follow up sonogram on thyroid nodes that were identified on me last year.  I called yesterday for the results of my lab work and was pleasantly surprised when she was the one who called me back.  The blood work and urine was normal and my A1c is back under 7%.  All of which made me extremely happy 🙂

Moral of the story.  Was I blown away by the first meeting with this new doctor?  I wouldn’t say so.  But she was more assertive in addressing things than what I’m used to.  And she adjusted one of my insulin to carb ratios, something that has never been done for me by an endocrinologist.  And we got along.  My dear husband’s view is that I became stagnant at my old practice and a change would be good.  This doctor is also associated with a bigger and better network which could be a benefit down the road.  I’m feeling positive which is definitely a good thing.  I think I will take the next three months to decide but I’m already leaning toward keeping Dr. R.  What I am very glad about is that I am an empowered patient and have the wisdom to make this sort of determination.  I wish everyone could have that knowledge and not settle for mediocre health care.

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Device Revolution.

The definition of revolution, according to Google, is a forcible overthrow of a government or social order for a new system.  I am starting to think that my diabetes devices are starting a revolution.  I am not sure what new system they would like.  Maybe a working natural endocrine system?  That would sure be nice!

I have been using the OmniPod system for 19 months; the new generation system for over 2 of that 19 months.  Within that time frame I’ve only had a few instances of bad pods or issues of that nature.  Until recently.  I obviously cannot prove that these new issues are due to the mechanics of the new pods.  However since I haven’t had issues before, that is what I am lead to believe.  A couple of weeks ago I had three pod issues in a row – two bleeders and one that was leaking insulin.  On various site locations.  I took a break from the pods for almost 2 weeks.  Today was day 3 of my first pod since that break.  And I got an occlusion during my breakfast bolus.  Unfortunately I did not have an extra pod with me nor any syringes  (that situation was remedied as soon as I got my hands on my supply) and I had to go home from work to get insulin.  Not the best situation to be in.  When I removed the pod, there were no visible signs of cause for an occlusion.  Taking another break.

Also, I have been using a Dexcom CGMS for almost 5 years; the G4 system for 9 months of those 5 years.  For most of that time I have used my outer thighs primarily for sensor sites since I cannot use them for infusion sites (due to lack of absorption).  No major problems other than the occasional failed or wacky sensor, one bad transmitter and one broken receiver.  In all that time.  Then all of a sudden in the past few weeks I have had numerous bleeding sites.  Some that have not affected the performance, some that have.  I am sensor-less at the moment, giving my skin time to breathe.  But I am going to attempt another one this evening.  I am honestly lost without my CGM.

Using diabetes devices should not be stressful.  I normally do not feel burnt out easily when it comes to my diabetes.  But these recent problems have me totally burnt out.  I can’t help but feel that all of a sudden, I am doing things wrong.  I’m hoping this revolution will be put to an end soon when they realize a working pancreas is not going to happen 😉

Frustrations Galore.

This has been one rough week and I cannot wait until it is behind me.

  • My boss is on vacation so I’ve been filling in for him.  That has lead to some hectic times in the office.  It’s great being in charge sometimes but I am looking forward to having that extra load lifted come Monday!  Also at work, being part of a huge organization can create complicated processes and frustration that are truly unnecessary.
  • I was expecting a shipment at home from Modell’s (new sneaks baby) this week.  It was initially shipped via FedEx SmartPost which means that FedEx brings it to the US Post Office who then delivers it.  In tracking this shipment, I saw that it went from my city, to the next one over, then to New Jersey, a whole other state.  I cannot begin to tell you the frustration I had in trying to get to the bottom of where it was going to wind up.  Sitting silent on your end of the phone because you cannot get passed the automated voice prompt in order to speak to a real person.  USPS needs to improve their telephone customer service system!
  • Insurance.  I admit I’ve never really had to deal with insurance woes.  My coverage is above average and never resulted in denied claims or anything of that nature.  This year, my employer switched to Anthem BCBS and I hate them.  Every shipment of pods that I get from Edgepark is initially denied, they request medical records (of what kind, I have no idea) and take 2 months or more to finally approve.  My last order from 5/22/13 is still not approved.  This is the third time they’ve done this and Edgepark will rightfully be hesitant to send my next shipment which is scheduled for 8/3.  I’ve attempted to work something out with them so that this does not happen every time to no avail.  This has become so frustrating and now also worrisome that I will not receive my pods in a timely manner.
  • My employer offers a health advocate service and I figured my insurance approval for pods issue was the perfect opportunity to engage such a service.  This is what I was told by them today “Unfortunately, the distributor has the right to hold any shipment if payment is not received.  Your only option would be to pay the charges and submit the bill to the insurance carrier for reimbursement as the request for medical records are to determine medical necessity.”  Hello more frustration.
  • Insurance.  I admit I’ve never dealt with insurance woes.  My (previous) pump was an Animas Ping that came out of warranty last month.  I received a new one with word from Animas that no preauthorization was required and that it was covered 100% under my durable medical equipment coverage.  Anthem has approved this claim with the amount of the pump not covered.  Animas claims they are working on it and assured me I would not have to pay for the pump.  I informed them more than once I am NOT paying $6,000 for the pump.  So incredibly frustrating.
  • My endo appointment was last week and not only did my A1c go up a bit, so did my cholesterol.  This is the first time ever that it’s been slightly elevated so I’m not terribly concerned.  However I am trying to think of what could have possibly caused it and am extremely frustrated that I can’t seem to narrow it down to anything in particular.  If anything, I’ve been exercising more and eating a bit better!
  • In the 18 months I’ve been using the OmniPod system, I have had very few issues with pod failures and other problems.  Last week when it was about 100 degrees in NY, I changed a pod to my lower back only to sweat it off in 5-10 minutes flat.  Since I was afraid of sweating more pods off, I was mainly using my abdomen for pod sites, although still rotating areas as much as I could.  One pod turned into a bleeder and when I took it off looked possibly infected.  Luckily I tended it to right away and it was not actually infected.  The pod after that started leaking insulin and left a huge welt on my belly.  Thinking I should give my abdomen a break and with slightly cooler weather, I turned to my top butt for the next pod.  Which also turned into a bleeder.  Three pods in a row that had to come off early and resulted in high BG.  Insulet is replacing 2 of the 3 pods however that does not replace the frustration it has been to deal with this issue.  I am extremely thankful that I have an alternate pump to use instead for the time being.

Can I scream now??!  I hope you are having a much less frustrating week!