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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Recharge.

Have you ever felt that something in your life needed to be “recharged”?  I have been going to my current diabetes care office for about 14-15 years.  When I met my husband, I think I was still seeing my pediatric endo!  Fortunately my mother in law worked in one of the local hospital systems and recommended an endocrinologist to me, one that she knew of from the hospital.  And so I went.  I was pleased with Dr. R and the rest of the staff including both CDEs that I have been seen by.  It was under her encouragement that I went on an insulin pump almost 7 years ago.  Then about 2-3 years ago (I think) Dr. R left the practice to go somewhere new and since then I have been seeing her replacement, Dr. K.  I am very comfortable with this office.  They always get back to me and get any paperwork or prescriptions filled out pretty quickly. They even know me by just the sound of my voice!  I go for my visits every 3 months like clockwork.  I don’t dislike Dr. K at all but sometimes I feel that she may be too easygoing.  Only ordering blood work at my own request.  Not fully understanding why I have some minor complications after 31+ years.  I have been feeling recently that maybe an overhaul of my health team was in need.

 

This past weekend we were at a friend’s 40th birthday party where I met a fellow person with T1D.  We chatted briefly and she asked who my endocrinologist was.  She told me hers and said that she loved her.  That got me thinking even more.  I made a call to this new doctor yesterday to find out if she was accepting new patients.  She is, however a referral from a doctor is needed in order to be seen.  Even though it sounded strange to me, I went in search of who could provide me with the referral.  Lo and behold, my awesome gastroenterologist was willing to provide me with what I needed.  And I have an appointment scheduled for early next month.  I have such mixed emotions.  I’m hopeful that maybe I will love this doctor.  I’m scared about seeing someone new and being in a new environment.  I feel bad about finding somewhere different, like I’m cheating on my current health team.  I’m optimistic that my diabetes management will get the boost it possibly needs.  But most of all I’m nervous that it will turn out to be me, the one who has been too laid-back with things.

Day One of Diabetes Blog Week, 2013.

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Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

My diabetes health care team consists of two people for the most part – my endocrinologist and my diabetes educator (CDE). I am fortunate to consider my relationship with both of them pretty darn good.  I spend more time with my CDE, M,  at each visit (although I hate to admit it’s been a while since I’ve seen her) since we go over in more detail my blood sugar readings, glucose monitor history and other records like food and exercise.  My endo, Dr. K, goes over things with me at more of a high level.  Since M and I do a lot of poking and prodding while together, I feel like she has a true sense of my day to day management.  I also talk more with her about my advocacy efforts, social media involvement included.  With that being said, I think there is something that I would like Dr. K to know.

I’ve started with minor complications.  And this seems to surprise Dr. K.  I’ve only been seeing her for about 2 years.  (I’ve been going to that diabetes practice for about 15 years but Dr. K took over for my old endo when she left for a different practice)  For this reason, she has only really seen the better side of my diabetes management.  When I first began being treated here, I was on MDIs of a sliding scale with an A1c in the 8%-9% range if I had to guess.  Then around 2006, I got much more serious about things and got an insulin pump.  It was ever so slow progress, but over the years since then, there has been improvement in both my A1c and my overall management.  Maybe in her eyes, this is how I’ve always been.  But I haven’t.  I’ve also have diabetes for 31 years.  This is a long time of high and low glucose levels.  Much of that time with higher than desired levels for various reasons.  These things can lead to complications. I’ve seen what can happen through my father.  And I am scared to freaking death of that.  I’m doing everything I possibly can, now, to keep the complications to a minimum.   I sincerely appreciate her goal of keeping my A1c at a desired level, without too many lows, to keep my diabetes health in check.  I’m very glad she realizes the importance of that in this stage of my life.  But I’m not sure why she’s surprised at what has started in my body.   I don’t think she’s ever asked what my diabetes was like all those years ago.  Maybe that would help her put things in better perspective.  Even so, I’m hoping we can continue to work together to keep me alive and my organs healthy for a long, long time.

Logging Made Easier.

If there is one thing I do not do well as a person living with diabetes, it is logging.  Anything.  When I see my endocrinologist every 3-4 months I just download my BG readings from my meter(s) for the past 30 days, print it out and present it to her.  She is fine with that.  When I see my CDE however (alternating between her and the endo), we go over my readings in more detail.  Since she has the “clinical” software in the office, she downloads both my Omnipod PDM and my Dexcom data.  The one thing that is helpful for these appointments with M is to keep track of events such as food intake, exercise, illness etc.  Sad as it may be, there is no way I can remember what I ate or how I felt last week!  So I usually log these things for about a week prior to my appointment.  What I’ve been doing for the longest time is keeping a self made Excel spreadsheet with this information on it.

My next appointment with M is next week so it dawned on me that I needed to start logging.  However I was frustrated with the good ol’ Excel file and was trying to find another app available to keep track of such info whether on my iPhone or on the web.  Since I already have a few diabetes related apps on my phone, I did some scrutinizing.  It turns out that the iBGStar app is working well!  (side note: I do have the meter but do not currently use it)  It is still a form of data entry since I’m really only entering information when I eat or exercise or don’t feel well but it’s easier for me to use since believe it or not, I am not always near an Excel workbook.  The key to entering the actual food I am eating, and not just that I ate fatty food or miscalculated carbs, was to add a new note.  The option is already there to add BG, amount of carbs and amount of insulin.

I especially like the way it is presented in the report when you compose data to send via email.  Now I am not sure I will actually email her my logbook since that office is anti-email unfortunately but I can at least print it out for her.

I remember the days of having to write down my BG readings before a doctor appointment.  I do not want to go back to those days.  Ever.  Having apps like these is extremely helpful.  Especially for someone like me who hates logging with a passion and will find every excuse not to do it.  Now if only I was able to email the health care providers in the office I go to.

I Like When Change is Good.

I have made two rather major changes to my diabetes management recently. And I can’t say for sure if it’s one or the other, or a combination of both, but I have seen improvements in my overall BG readings. Which of course is a good thing. For the first time in my insulin pumping life (5+ years) my CDE reduced ALL of my basal rates. Each and every eight of them. That has never happened since I’m on the pump. I wasn’t sure how I felt when I left her visit. I wasn’t exactly experiencing way too many lows. But there have been hours at a time in the past couple of weeks where I’m stuck around the 70-80 mg/dL range. And the lows I have had, she was able to trace to too much basal insulin. So I thought the worst that can happen is I run high and change them back. Right?

Well my first day on my new basal rates have resulted in readings of 60, 99, 112, 152, 142, 115, 106 and 122 mg/dL so far, with the Dexcom line to go with it. I am pretty surprised actually. I guess the reductions may not be too much like I thought! Props to M 😉

So what are these changes you are probably wondering? Switching from Novolog to Apidra insulin and from a tubed pump to the OmniPod. Now your guess is as good as mine why the OmniPod would better control my BG. My guess would be that there is no tube for the insulin to go through so a more direct delivery into my system? No kinks or bubbles from tubing? An angled infusion set as opposed to a straight one? Has any of this been proven? Not that I know of. But for some reason it seems to be working better for me. The Apidra has improved my postprandial (post meal) numbers. My current endo, as well as my previous one, felt there wasn’t much difference between Novolog, Humalog and Apidra. But according to their website “Apidra® works quickly to help control mealtime blood sugar ‘spikes’. You can take Apidra® rapid-acting insulin within 15 minutes before your meal, or within 20 minutes after starting a meal.”  I had tried Apidra once about a year ago or so and didn’t stick with it for some reason.  But this time I paid more attention and tracked the difference it has made.   

Whatever the scientific reasons behind these changes improving my BG results, I truly hope it continues. I’d really love to see an improvement in my A1c in April.

*please keep in mind that I am in no way stating that taking Apidra or using the OmniPod will improve everyone’s diabetes management – don’t forget – your diabetes may will vary*