A Whole New World

I feel like I’m navigating the diabetes waters all over again, from scratch, lately.

I got a new full-time job, with new insurance, and new insurance requirements.

First and foremost: insulin. I have used Novolog for many years now. My new insurance prefers I use Humalog. I could still get Novolog…but I can’t really afford the price difference, so I had to switch. I haven’t started using the Humalog yet, as I have a little ‘stockpile’ of Novolog and my CDE recommends I use all of that up first so that if my ratios, etc. change with Humalog I won’t have to change everything back when I do eventually use up the last of my Novolog.  We’ll see how the switch to Humalog goes, whenever it happens. I think I still have about 4 months of Novolog in my fridge…

Secondly: my endocrinologist. I love him. And he’s moving to Cincinnati. So…I am going to have to start seeing someone new. The good news is that he’s hand-picked someone for me that he says is very comfortable with insulin pumps and CGMs, works with my CDE, and has expertise in working with pregnant women with diabetes (this way, if kids are in my future, I will already be seeing an endo with a lot of experience in handling diabetes and pregnancy).

Third: DME. My insurance wants me to use their ‘in house’ DME service, but their service hours suck, to the point where I’m just going to go ‘out of network’ and continue to use Tandem and Byram for supplies….but pay 2x as much. Convenience is a huge huge huge huge thing for me, and having no one available outside of my working hours to take an order, my insurance info, my prescriptions, my payment information, my shipping and billing information, my doctor’s information, etc. is almost impossible for me to handle. I live in the 21st century. I expect companies to have either evening service hours and/or an online reorder system. When they have neither, I kind of don’t want to do business with them. I mean…really?

Fourth: my pharmacy. I absolutely hate Walgreens and about 2 years ago I moved my prescriptions to Target…and I fell in love with their pharmacies. They have a smaller staff who have gotten to know me by name, know I use an insulin pump, are fast and efficient, etc. They always have my insulin in stock (Walgreens ALWAYS made me wait 24-48 hours because they did not have enough insulin on hand to fill my prescription). I could refill prescriptions via text message and I often received response texts within 10 minutes stating that my prescriptions were filled and ready for pick-up. My current insurance, again, wants me to use their ‘in house’ pharmacies. I don’t want to, but I’ve had to make the switch as pricing for an ‘out of network pharmacy’ like that at Target would double my copays on all prescriptions. I was not overly impressed with my first visit to my new pharmacy, but we’ll see how it goes.

I guess I am just frustrated: I had been in a place where I had a doctor I loved, an insulin that worked very well for me, DME providers I trusted and had no problems with (EVER) who were in-network and cost-effective, and a pharmacy/pharmacists who made things as simple and fast as possible for me. And now…all changed or gone.

Diabetes is hard enough – we as patients do not need tyrannical insurance companies/monopolistic health care systems to tell us what to do….

Low Blood Sugars and Emotional Control

I did something I am not proud of last night. I threatened to hit my husband during a somewhat petty argument.

Why?

My blood sugar was low. Very very low. At the time my Dexcom said 47 with a down arrow and wasn’t keeping pace well. By that point I was probably actually in the 30’s.

As people with diabetes who have experienced severe lows we understand – we are often not ourselves during a low. There isn’t NEARLY enough glucose for proper brain functioning and parts of our brain literally are not working correctly – sometimes the parts that control motor movements (which is why sometimes people with lows can’t stand up or walk properly), sometimes the parts that control inhibitions (which is why sometimes people with lows are mistakenly thought to be drunk, especially by law enforcement), sometimes the parts that control both receptive and expressive language (which is why sometimes people with lows slur their speech or speak sentences that make NO sense and have difficulty in understanding what you are saying), sometimes the parts that control memory formation (which is why sometimes, especially surrounding a severe low, ‘memory loss’ occurs – because memories were literally never formed!), and sometimes the parts that control emotion (which is why sometimes people with lows react with overdramatic anger/rage, sadness and crying, euphoria, paranoia, etc). Sometimes more than one of those.

Last night's blood sugar rollercoaster

Last night’s blood sugar rollercoaster

Last night I was definitely having difficulty with inhibitions and emotions at the outset of my first low. By the end of my series of lows I was losing motor control. This was a terrifyingly long-lasting series of lows. I ate about 7 glucose tablets and began coming up after my initial low (and overreactionary threat). I ate dinner, with no bolus….but then went low again. I began a two hour 0% temp basal and drank an entire can of Pepsi and came up…then went low again. I ate TWO protein bars with peanut butter and finally went up…hoping the protein would help (and it did…until I went low at 2:45am again). My Dexcom read ‘LOW’ (meaning below 40 – it won’t give a number at that level) far too many times.

And while in my head I KNOW that this extremely bad incidence of hypoglycemia was to blame for my comment to my husband, I also can’t stop feeling guilty. A part of me feels like I should have been ‘smarter’ than my failing, stuttering brain. That I should have been able to control myself at all times, despite being so low that many OTHER people would have reacted with unconsciousness and seizure.

The worst part is that our spouses, families, etc. don’t ‘get it’ – because really, how can you POSSIBLY ‘get it’ when you’ve never felt/experienced hypoglycemia like this? How can anyone who hasn’t felt the loss of and inability to regain control truly know what it’s like? They may say they ‘get it’ and be forgiving – or they may say it’s an ‘excuse’ and not accept it as an explanation for our behavior…….but either way we are isolated from them in that we know how it feels and they never truly do.

I’ve only reacted with overwhelming anger one other time when I was low – I was at work and suddenly found myself on the floor (apparently I didn’t pass out, but in the middle of walking I just plopped myself down in a sitting position on the floor in the middle of the store) and when pressed to drink juice by a boss I reacted by striking out and hitting him in the face. My thought process at the time was ‘How dare you tell me what to do?!’ but instead of reacting like a normal person to this thought I reacted with overdramatic anger and violence. Because my brain was not functioning correctly. Now we can all laugh about it but after last night, I no longer find it quite so funny. I don’t WANT to hurt anyone and I don’t want to anger anyone with my own inappropriate and misplaced anger.

Please share with me YOUR stories of extremely low blood sugars. Have you ever hit an EMT, family member, or friend trying to help you? Have you ever thrown things and had a tantrum like a child – because at the time it’s the only reaction that makes any sense to your glucose-starved brain? Have you ever done something ridiculous when low that now you can look at and think ‘What the HECK was I thinking?!’. Have you ever had a low that you had to hear about from others – not because you passed out, but because you lost the ability to properly form memories? I want to hear about them. I NEED to hear ‘me too!’ and know I’m not alone right now, because my feelings of guilt are overwhelming right now.

Asante Solutions: Out of Business

If you use an Asante Snap insulin pump you have likely been notified by Asante Solutions, but for the general public who may be interested, this comes directly from the Asante Snap’s website on their ‘Blog’ link under the ‘About Us’ title:

We regret to inform you that as of Friday, May 15, 2015, Asante Solutions, maker of the Snap Insulin Pump, will be closing our doors and the company will no longer be in business. If you are a Snap user, please contact your healthcare provider with any clinical questions you have. For questions about your pump supplies, please contact the distributor that has been shipping your supplies.

If you are interested in transitioning to a new pump, we suggest you call Animas to learn more about the new Animas Vibe, which is integrated with Dexcom CGM. Animas is graciously offering a limited time offer to all existing Snap users to transition to the Animas Vibe pump. If you are interested in learning more, simply call 1-877-937-7867 x1562.

We sincerely regret this situation.

Asante Solutions

JDRF Type One Nation Summit 2015

Today I attended the JDRF Type One Nation Summit in Pewaukee, WI. This was the first JDRF event I’ve attended besides the annual fundraising walks. In fact, I haven’t attended many diabetes-related functions of any kind….in addition to the JDRF walks, the only other things I have done is one ADA walk and in 2010 I attended the ADA Expo in Chicago.

It was exciting to attend and be able to see, hear, and talk with other people with diabetes, their caregivers, and medical professionals who work with type 1 diabetes. I was excited to see if I’d experience some ‘me too!’ moments – those moments when you connect, personally, with something another person is saying about diabetes, experiencing, etc – and I definitely had a few.

The morning started with a vendor fair, and I was excited to be able to speak with representatives for Tandem, Asante, and Animas (and to pick up some goodies, like World Diabetes Day shoelaces and a cute glucose tab tin shaped like a t:slim pump). I’m excited to see the updates to the Animas Vibe from the Animas Ping (besides the Dexcom integration) which include a ‘back’ arrow in the function screens, more controlled ability to enter a bolus without having to scroll, etc. They’ve definitely taken the Ping, which is a great pump, and expanded on that! I got to see and handle an Asante Snap pump, which has some nifty little features I wasn’t aware of – like a built in flashlight! The rep told me that they expect to have preloaded Novolog cartridges available by fall, so this fall I may request a 4 week free trial of the Asante Snap! I love the idea of almost instant cartridge/tubing changes – that’s a huge selling point for many people, I think.

The representative of Tandem was the person I was most interested in speaking to, as I currently use a t:slim pump. She told me that they expect the pump integrated with the Dexcom G4 to be available for sale in 2016. (Note: there is controversy surrounding this lately, as on their recent Q1 report call it was revealed that Tandem does NOT plan to offer an upgrade option to existing customers to upgrade to the newest pump – the integration with Dexcom goes beyond a software upgrade and thus if you want it you will have to purchase a whole new pump at cost. I have seen a rumor of a petition being developed for t:slim users who don’t agree with this business tactic – more on that later if it happens!) She stated that there are some pretty big software upgrades currently available for the t:slim – all new customers will get a t:slim that automatically has this new software included on it. Existing customers, however, are out of luck until the FDA approves Tandem to push these software upgrades to us via USB cable/the internet. She indicated that it likely won’t be until 2016 that we see this option available to us, which I was disappointed to hear….

The upgrade sounds pretty awesome! It includes the following updates/new features:

  • even brighter screen colors/better contrast
  • reverse correction boluses (you will be asked if you want to reduce a bolus if you are lower than your target, but above 70)
  • ability to fill a cartridge prior to installing it on the pump (currently some people already do this – but it only works sometimes, only if you are using less than 300 units, and the risk of getting a cartridge error is high)
  • ability to enter a manual bolus without first entering a carb value
  • better ‘fill estimates’ on how much insulin is in the cartridge after initial fill, with more precise measures after the first 10 units have been pumped
  • the pump history will now display TDD (total daily dose) for EACH day (not just today, 7 day avg, etc) broken into units and percent basal vs bolus
  • better alerts for multiple/consecutive occlusions prompting users to change their infusion site after 2 alerts
  • updated auditory notification/alert sounds
  • after-bolus BG reminder can now be set down to the minute
  • the ability to see your status screen WITHOUT having to tap 1,2,3 to first wake up the pump
  • the time to prime tubing is reduced by 20%

I honestly don’t know what I will do when my current t:slim comes out of warranty in early September of 2016. If the G4 integrated t:slim is out, I’ll likely just go with that – but if for some reason it’s not, I will seriously be considering the Vibe or the Snap (note: I hate Medtronic (thus why I haven’t mentioned them) and won’t consider them, but I know others love them, and that’s fine).

ANYWAY….after the vendor fair I had my first sort of surreal moment during the keynote presentation. One woman at our table checked her blood sugar and took out glucose tablets. The woman sitting next to my husband changed the battery in her pump. I then had a high blood sugar and had to give a correction bolus. It was so empowering to not have a single person bat an eye, stare, etc. It was just ‘normal’ and I relished that feeling.

During lunch I had an exciting (and also surreal) moment when the Certified Diabetes Nurse Educator I saw every 3 months from the time of diagnosis at age 6 until I left pediatric care (after I graduated high school) came and sat at our table. We remembered each other almost instantly. I’m quite frankly amazed that she’d remember me – she’s been working with children with diabetes for decades and must have seen thousands of patients in her life, and yet right away she remembered me (and my dad, who was always the one at my appointments with me). It was touching to know that she is so invested in what she does that she remembers a patient she hasn’t seen in over a decade.

There was a lot of small talk at the tables between speakers/panels and much of it was ‘how long have you had T1?’ or ‘which CGM do you use?’ which was also nice – because it’s not something I can just go up to anyone and freely discuss. It’s very liberating to be in a room full of people who also ‘get it’.

I’m regretting not attending an event like this earlier, though to be fair there are very few that occur in Wisconsin!

What Gastroparesis Does

If you aren’t familiar with gastroparesis, you are lucky. Many people don’t realize that it’s much more than feeling full/bloated/nauseated and vomiting (though it IS all of those things). It affects blood sugars.

Here is a perfect example.

up, up, and away....

up, up, and away….

I ate around 2:30pm. I stayed surprising low – my BG never peaked. In fact, I needed a juice box at one point because I was 77 and dropping just an hour after eating. That juice box did the trick and everything seemed fine again….then out of nowhere, I started skyrocketing. I was in class just as it began and I was shocked at how fast I was going up. My CGM shows my blood sugar going up over 150mg/dl in the space of about an hour to an hour and a half from where my BG started.

….Apparently my food was digesting, when I no longer had any IOB to help me out. I rage bolused for SIX HOURS to try to get my blood sugar under control. I did it but I’m angry….

I’m angry I had to drink that extra juice early on, right after I ate (those extra calories add up!). I’m angry I had to give SO MUCH extra insulin because I essentially had to bolus for my meal TWICE…once when I ate, and again when I actually digested it.

Gastroparesis is still new for me. It’s still sporadic. I don’t have flare-ups daily. Sometimes my flare-ups don’t do much to my BGs, sometimes they do. There is no pattern to any of this yet.

For anyone out there who deals with gastroparesis and diabetes: I’m sorry. This sucks. For anyone with gastroparesis that has advanced to a point you are feeding via a tube/you can’t handle solid foods: you are my heroes. Seriously, I can’t imagine that and how difficult it must be.

Do any of my readers/followers have gastroparesis? Share stories, tips, advice, etc. if you want!

Still Satisfied

Back in November of 2013 I wrote a blog post about how great I think my endocrinologist is (My Endo is Super) and I continue to feel that way.

Lately I’ve seen a lot of people complaining that, while they want to do better with their own diabetes care…they aren’t getting the support they want or need from their endos.

I’ve seen stories of people whose endos will not write them RXs for a CGM because ‘they are only for people who can’t feel their lows….it’s an abuse of health insurance funds for anyone else to use one’.

I’ve seen stories of people who have lowered their A1c levels and instead of getting the pat on the back they expected, they were told ‘this is dangerous…you cannot maintain this without a lot of lows’ (despite the fact that many of these people are NOT experiencing a lot of lows, and are still maintaining A1c levels well above ‘normal’).

I’ve seen stories of people being told that their A1c levels in the mid-7s are ‘perfect’ and they don’t need to aim for anything lower.

Personally….I think all of those endocrinologists are a little bit crazy. Either way, I’m thankful they are not my doctors, because if they were….I’d have to completely disregard them, their comments, and their ‘recommendations’.

I remain thankful that I have an endocrinologist who sees the value in a CGM for ANYONE with diabetes who is self-motivated to care for themselves the best they can. I remain thankful that I have an endocrinologist who can celebrate A1c levels below 6 (complete with happy dances, high fives, and sticking his head into the hallway to brag to the CDE across the hall about what he and I have accomplished) instead of chastising me. I remain thankful that I have an endocrinologist who realizes that we can handle low blood sugars in a way that doesn’t require him to tell me that my A1c must remain over 7. I remain thankful that I have an endocrinologist who knows I can and trusts that I will change my rates and ratios as needed to react to patterns and changes in my reactions to insulin. I remain thankful that, if I do have a question, I have an endocrinologist who will email me back within 24 hours – he has even emailed me at 1 or 2am in the past. I remain thankful that I have an endocrinologist who saw something questionable in my eyes and recommended I see a retina specialist (who diagnosed me with retinopathy) or heard something strange in my heart beat and recommended I see a cardiologist (who diagnosed me with a form of tachycardia and put me on medication to control it)…a doctor who didn’t waste time getting colleagues with more knowledge of certain health conditions involved in my care. I remain thankful that I have an endocrinologist who has never questioned my desires when I’ve wanted to switch insulin pump brands (even when Tandem was brand new and he’d never heard of them before….he told me he’d do some research on it, and within a day he was emailing me back to say it looked awesome and he’d be pleased to help me get a t:slim, if that’s what I wanted) or glucose meters, so have needed all new RXs. I remain thankful that I have an endocrinologist who is involved in diabetes advocacy (he was the American Diabetes Association’s Wisconsin Chapter President in 2013) OUTSIDE of his work-day.

More and more lately, while hearing from others in the DOC, I realize just how lucky I am to have found the endocrinologist I have….and I am more and more convinced I do not ever want to be in a position where I can’t see him anymore or have to switch to another endo for insurance reasons, etc.

Do you like your own endocrinologist? Do you feel he/she could do a lot better at supporting you? I’m interested in hearing from all of you….