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….

Blood Sugars: A study in photos of my Dexcom G4

Throughout most of my time with diabetes I’ve known what affects my blood sugars; after all, it’s fairly obvious, if testing BG enough, to determine whether something causes a rise or a fall in BG levels. However, it wasn’t until I got my Dexcom back in May that I fully realized just how much some things affect my BGs (or how much I’d be affected by my Dexcom…)

If you don’t have a Dexcom….have you ever wondered what it looks like when you are sick? Stressed? Eat something you shouldn’t have? Eat something you didn’t think you should have and found it had little effect at all?

Since May I’ve taken a series of photos of my Dexcom receiver. Here are some of the photos I find most telling about living with T1 diabetes:

I've got a pretty good handle on how to bolus for sushi
I’ve got a pretty good handle on how to bolus for sushi
Being served the wrong drink at a restaurant should be a crime
Being served the wrong drink at a restaurant should be a crime
Diabetes likes to keep me up at night
Diabetes likes to keep me up at night
My Dexcom has an attitude problem....
My Dexcom has an attitude problem….
Some days are super awesome and everything goes right
Some days are super awesome and everything goes right
It's just not worth being too aggressive with the glucose tabs or the juice...
It’s just not worth being too aggressive with the glucose tabs or the juice…
Sometimes I think my beta cells are still active, and get joy out of f*cking with me....
Sometimes I think my beta cells are still active, and get joy out of f*cking with me….
Being sick makes diabetes act like a roller coaster, regardless of food intake (this was a day I was sick enough that I didn't eat)
Being sick makes diabetes act like a roller coaster, regardless of food intake (this was a day I was sick enough that I didn’t eat)
Stress has amazing powers on the body. This was the rise during my grandfather's funeral, and the crash back down
Stress has amazing powers on the body. This was the rise during my grandfather’s funeral, and the crash back down
Highly processed pastas like mac and cheese are not my friends....
Highly processed pastas like mac and cheese are not my friends….
Apparently ice cream has very little affect on my BGs. This is just one image, of three that I have, of similar flat-lines after whole pints of ice cream, DQ Blizzards, etc. Ice cream is a safe food for me and my diabetes.
Apparently ice cream has very little affect on my BGs. This is just one image, of three that I have, of similar flat-lines after whole pints of ice cream, DQ Blizzards, etc. Ice cream is a safe food for me and my diabetes.

Test Strips No Longer Covered….and a note about my blog

I’ve hit a strange impasse with my insurance company (Anthem BCBS). They no longer cover ANY test strips except OneTouch brand strips. All other strips cannot be charged to my insurance. OneTouch strips can be, and I pay a $55 copay for them.

What makes me shake my head in wonder at the stupidity of the insurance company is that by asking me to switch back to OneTouch….they are asking if they can pay more every month for my strips. Like….$100 more per month. Yep…despite having a copay I’d have to pay for OneTouch, the insurance company would also be losing $1200 per year by asking me to switch test strip brands. Yet….they stupidly are doing so.

Anthem BCBS: No wonder you have to raise premiums.  You are costing yourselves MORE money by insisting that every diabetic on your policies use the most expensive test strip brand in the world. Yes, OneTouch makes awesome meters. Yes, they are popular. But…you can’t deny that their strips cost more than any others, anywhere….

I had switched to a ‘generic/store brand’ meter to lower costs, both for me and my insurance company.  That’s no longer ‘allowed’. I’m just so baffled by this choice.

Anyway, I’m not willing to pay $55 a month for strips, when just last year I was paying $0 a month for strips.  I will be switching from the Agamatrix premium meter (made for Target stores) and buying a Relion Prime meter at Walmart….I can buy my 250 strips a month without involving insurance at a cash/retail price of $45…..$10 less than my copay on my insurance’s ‘preferred brand’.

Does anyone else see anything wrong with this picture?

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And a note about my blog: I am more than happy to receive emails from those with questions or who want to talk about something I’ve mentioned in my blog. However, if you are asking me to include links in my blog that have NOTHING to do with me or my blog or my reasons for doing anything I do (wearing a pump, using a CGM, etc)….I won’t respond. Mostly because it’s obvious you haven’t actually READ my blog. Please don’t ask me to include links that have no relation whatsoever to anything I’ve ever written. Please don’t ask me to include ‘official’ links for products that are only the official links if I live in the country you are marketing from. I live in the USA. I will link only USA website version links, unless one doesn’t exist and then I will link the page I deem most appropriate to an American audience (I realize my blog is read by people around the world….but 95% of the people who read this blog ARE from the USA…and I often talk about products that I use that are only available in the USA or a few select other countries…).

Pump Me Up!

If you haven’t heard, there’s been some exciting news in the insulin pump world lately.

Here in the USA the long-awaited Animas Vibe is now FDA approved and you can pre-order your pump before their official release sometime next month.

The Animas Vibe integrates an Animas pump (like the Ping…but without the remote meter) with a Dexcom G4 system, displaying CGM readings right on the pump’s screen.

In addition, Medtronic has released their new 640G system in Australia. The 640G is a completely updated pump, in terms of looks. It includes a full color screen instead of the old pager-style screen Medtronic is known for. It continues to integrate the Medtronic CGM with the pump, and also comes with a remote meter. This is a huge win for Medtronic because this is a key feature the Animas Vibe is missing.

Personally, I am not a Medtronic fan but their new pump looks cool. I love my Dexcom however, so integration for me has to involve a Dexcom. I’d love to test drive an Animas Vibe, but I ultimately am holding out for the much anticipated t:slim G4 insulin pump (the t:slim with integrated Dexcom) to be FDA approved.

(Speaking of t:slim there are rumors of a t:flex, which will have a 480 unit reservoir for those with insulin resistance and/or Type 2 who may need to use larger daily doses being released sometime in 2015, and there continue to be whispers of a t:dual which is a dual chambered pump capable of holding both insulin and glucagon – in theory, for use in a closed loop/artificial pancreas system.)

So many exciting things for those of us with D to consider in our arsenal of tools!

New Diagnoses

So a while ago I posted about gluten. Since then, here is what has happened: I continued to eat gluten free for about 2 months…..then I fell off the bandwagon for a bit because I realized that I was still experiencing some nagging symptoms that just didn’t seem to be resolving by cutting out gluten. Over the next 2 months I ate about 95% gluten free – so I definitely had moments of ‘cheating’.  Over Thanksgiving and the weekend afterward I ate quite a bit of gluten (with at least one meal each day) and on Monday I was very ill.

However, my symptoms still didn’t quite add up to me: a lot of them can be associated with celiac disease or a gluten intolerance, but many of them cannot.

On Tuesday I had an appointment with my endocrinologist and I explained everything to him – how I’d been feeling throughout 2014, my symptoms that seemed to be related to/coincide with the consumption of gluten and my symptoms that seemed to have no relationship to gluten consumption….several of which involved strange things happening to my blood sugar levels.

As I talked, his facial expression changed and I knew he was going to say what I didn’t want to hear: ‘I think you have gastroparesis’.

He ordered a few antibody tests for celiac, despite knowing I had only been consuming gluten regularly for the past 5 days and intermittently before that….meaning the result might come back with a false negative.

He prescribed Reglan for my nausea/vomiting (though I am apprehensive to use it as the side effects are scary, so I’ve only taken 2 of them in the past 2 days – despite being prescribed enough that I could in theory take 3 per day) and to stimulate digestion. He advised me to begin cutting fat and fiber from my diet and asked me to keep him up to date on whether these small adjustments are helpful or if I develop new symptoms.

Today the antibody tests came back – I am on the borderline between a negative and a positive result  (by a one point difference). Considering I hadn’t even been regularly consuming gluten, my doctor says he believes me to have celiac disease but he can’t officially put that into my record without a lab result to support it, so for now it’s not being documented. He wants me to eliminate all gluten from my diet now, however, so my gut can begin to heal. Once my gastroparesis symptoms are further under control we will talk about reintroducing gluten to see if we can absolutely confirm a celiac diagnosis.

He said that as far as the gastroparesis is concerned he wants to do a gastric emptying test and upper endoscopy…but not yet. He wants some of the celiac damage to heal first, if I do in fact have celiac disease (which, like I said, he’s fairly sure I do). There is one symptom I’m having, as of today, that concerns him and may result in needing an endoscopy and/or colonoscopy in a quicker timeframe to rule out any other issues or damage to my GI tract.

So….yeah. Gastroparesis AND celiac disease.

I’m one lucky lady.

For future tests I’m going to have to find a GI doctor…and I think I want to meet with a dietician to help me figure out what the heck I can eat…because a lot of the safe foods for celiac disease are NOT safe foods for gastroparesis, and vice versa.

“Talk About Your Medicines” Month: Insulin Safety

Talk About Your Medications Month

Earlier this month I was contacted by the Community Awareness Coordinator at the American Recall Center and asked to participate in their campaign to raise awareness of medication safety through creating a blog for “Talk About Your Medicines” Month (October).

First and foremost I want to apologize for not posting my blog until the last day of October.  I am the ultimate procrastinator! (This month has been crazy anyway – a lot going on with school, starting the application process for internships, volunteering, getting over bronchitis, getting all kinds of blood work and vaccinations, work, interviewing for a new position at work, etc….) But I am finally here, today, to talk a bit about the primary medication (insulin) I use and general advice I have for others who may just be beginning insulin therapy.

I take NovoLog, a fast-acting insulin. I DO NOT use a basal insulin (such as Levemir or Lantus) because I use an insulin pump. However, these guidelines/recommendations for use apply to all insulins.

In the course of my life with Type 1 diabetes I have used so many insulins: Regular, Lente, UltreLente, Humalog, Lantus, and Novolog.  Incidentally, there are actually still a few I’ve never used: NPH, Apidra, and Levemir.  As you can see, there are many different insulins! Each one acts differently than any of the others, though some are fairly similar to one another.  Each one has a different onset time (the amount of time between injection and when the insulin actively begins lowering your blood glucose), a different peak time (the timeframe in which the insulin has the greatest effect on your blood glucose), and a different duration (the amount of time it works in the body to actively lower your blood glucose). Some insulins are made to work quickly and are primarily used in the case of correcting high glucose levels or when eating. This is called a bolus. Others are made to work in a less dramatic and longer-lasting way to deal with the glucose occasionally released by your liver – these are given at set times of the day. This is called basal insulin. (Note, if you use an insulin pump your basal doses and boluses will all be handled with a fast-acting insulin typically associated with boluses.)

If you are a first-time insulin user, it’s important to remember that you need to follow your doctor’s orders. Give your insulin when he/she directs you, in the amounts or ratios he/she directs you to use.  DO NOT adjust your rate on your own until and unless you truly understand what could happen. Remember: insulin is a potent and potentially dangerous medication, if used incorrectly. An overdose can easily cause serious or even life-threatening low blood sugar reactions, requiring emergency medical care.  For what it’s worth: I change my dosage ratios on my own…….but I’ve had Type 1 diabetes for 22 years. I’ve used insulin since the day I was diagnosed. That’s a lot of experience.  If I were new to using insulin, I would NOT be comfortable making those changes without first calling my doctor. As it is, I still occasionally email my doctor between appointments to ask for advice or to let him know of any issues I am having and ask his opinion on changes to my dosages.

If you are new to using insulin you need to be sure to ask your doctor:

  1. What are the symptoms of low blood sugar (hypoglycemia)?
  2. What is the best way I can treat low blood sugar?
  3. How should I handle my insulin doses if I am sick and unable to eat?
  4. What should I do if my blood sugar levels are high and aren’t coming down with the dosage you’ve recommended to me?
  5. What, if any, other side effects should I be aware of? (Note: some people DO have allergies to certain rDNA insulins – this often, but not always, presents as skin rashes/painful welts/hives!)
  6. What should I do if I feel I may be allergic to the insulin you’ve prescribed?
  7. What, if anything, should I do to adjust insulin/food intake for activities involving exercise?
  8. How should I be matching insulin intake to food intake?

Unfortunately, I have seen too many horror stories of people new to insulin therapy being handed a vial of insulin and some syringes, told to ‘take X units of this insulin (a bolus insulin) before every meal and take Y units of this insulin (a basal insulin) before bed and before breakfast’…and that is all the instruction they are given. These people have little to no understanding of how insulin works or how it will affect them, and aren’t given guidelines on how insulin and food work in proportion to one another. These people often experience frustrating highs and lows, without understanding why.  Be an advocate for yourself and ASK QUESTIONS.

Also, remember to store your insulin appropriately. This means that unopened insulin needs to be refrigerated. Open vials and pens are typically good for 28 days at room temperature. If insulin gets too warm, it may lose potency and not work as intended. If you are noticing unexplainable high glucose levels, this is something to consider – could your insulin have gotten too warm?

Finally, if you are using older insulins which can be mixed (your doctor will let you know), you need to be sure to gently mix your cloudy insulin before use, and draw each insulin into your syringe in the order your doctor directs you. All newer insulins are ‘clear’ and cannot be mixed with one another. If you are not explicitly directed to mix insulins, DON’T DO IT - you could contaminate whole vials of insulin….and insulin is expensive!

Ultimately, be safe!

Being Thrifty

I mentioned something on social media a few days ago about a ‘lifetime supply’ of lancets, and how I get my test strips free every month. I’ve been getting a lot of ‘How do you do that?!’ questions, so I thought I would share.

Nothing I’m doing to get supplies is incredibly mind-blowing nor is it difficult and all of it is done honestly.

LANCETS: For my lancets – I primarily use the Accu-Chek Multiclix lancing devices, but also like the Delica lancing device from OneTouch.  The vast majority of the lancets I have are for the Multiclix, however.  What I mean when I say I have a ‘lifetime supply’ is not that I have enough to prick my finger with a brand-spanking new lancet every time……..I am notoriously BAD at changing my lancet, often not changing it until I literally just can’t make myself bleed. I recently found two large lots of Multiclix lancets on Ebay and purchased them at well below retail pricing. I have enough lancets now that I can change my lancet every two weeks and still have them last about 50 years.  (Yes, go ahead and tell me that I need to change my lancet every time or I will get infections….I’ll point out that in over 22 years I’ve never had a skin infection. Tell me I’ll get calluses….I’ll point out that I test so often my fingers were callused even as a child when I DID change the lancet every single time.)

The Multiclix lancets retail for $12.99 for a box of 102 at Target.  Even if I used insurance coverage to get 204 a month, I’d pay $15 out of pocket….averaging $7.50 a box.  The ones I got on Ebay ran me $4 a box and I only paid $2.54 to ship all of them.

To me….that is being thrifty.  For others, who wish to change their lancets every single time, this may just be a case of being silly.

TEST STRIPS: As far as my test strips, yes, it’s true….I get 250 test strips absolutely free every month.

See, my insurance formulary treats all glucose strips the same – every single brand (even store brand generics) fall into the highest co-pay tier on my insurance. They ALL cost $55/month in copay. When I learned about this I was dismayed, because my last insurance policy only charged $25/month. As an adult back in school, who gave up a full time career teaching, spending an extra $30/month was NOT something I wanted to do (especially because the cost of my insulin was also going up $30/month…and I haven’t figured a way out of that one yet!).  Incidentally, around the same time I chose to change from Walgreens pharmacy (I had been using Walgreens religiously since my diagnosis in 1992) to Target pharmacy.  I had had enough of Walgreens – they never seemed to have my Verio test strips or my Novolog in stock, and several times I had to wait a WEEK for them to get them in. They were never helpful about obtaining them from another pharmacy location for me – it was always up to ME to do the footwork, etc.  (Target, for what it’s worth, has been AMAZING.  No issues.  EVER.  And they have superb customer service.) Well, when I was in my initial consult with the pharmacist at my local Target, working out how to transfer my RXs from Walgreens to Target….she let me know about their store brand ‘premium’ meter and how with a RX from my doctor for those strips I could get a full month’s supply for just $4, under their ‘$4 generic program’.  I took some time to investigate and found that their ‘premium’ meter was a rebranded Wavesense Jazz. I went about getting a free meter and strips from Agamatrix (the manufacturer) to try it out and compare it to my Verio IQ prior to making a full jump over. After all, lower copays aren’t much good if accuracy sucks.  But the accuracy was great and I chose to get my RX changed from Verio strips to the Up & Up premium blood glucose strips.  Somehow or other I don’t even have a $4 copay….the way my insurance works in tandem with a generics assistance program somehow balances out to nothing………as in, I pay NOTHING for my strips every month.  (The best part is that Target still tells my insurance I’m being charged $55/month, but then Target ‘pays’ it on my behalf.  My insurance applies $55/month to my out of pocket maximum, even though I’m not the one paying it out of my pocket.)

So if you are willing to switch to a meter with a few less bells and whistles, it’s absolutely within everyone’s reach to obtain free or very close to free test strips every month.

DME: The last way that I’m ‘thrifty’ with my diabetes supplies is my purchase of DME supplies. If you’ve read anything else I’ve written about DME you know I HATE Edgepark because they markup their prices astronomically. I now get my supplies for my t:slim directly through Tandem. They were in-network for my insurance I had for 6 months last year, but they aren’t for the insurance I use this year. HOWEVER, because the price they charge is FAR less than what Edgepark (who IS in-network) charges and actually falls so far BELOW the maximum allowable charge by my policy, my insurance has agreed to reimburse as if they are in-network. Meaning my supplies each month work out to be about $35 out of pocket, instead of the $80 per month I was paying out of pocket for supplies from Edgepark…..for the exact same supplies. Now that I’m on a Dexcom I have to use a third-party for them (my insurance doesn’t contract with Dexcom either, and apparently Dexcom doesn’t want to touch the accounts of out-of-network patients unless they’ve exhausted all other options)………but I asked my local Dexcom rep to do some price checking for me and told him I’d under no circumstances use Edgepark. He got me hooked up with Byram. While they do markup, it’s only a few dollars per box of sensors and so basically my out of pocket payments for sensors through Byram cost the same as they would if my insurance worked directly with Dexcom.

The lesson here is that you need to price check. You need to talk to your insurance company to find out your options, call those companies and find out what their contracted rates are with YOUR policy, find out what YOU would pay out of pocket – and get it in writing if you can. Do not just accept the DME provider your insurance company at first recommends. They often are NOT the lowest cost option. (Why in the world insurance companies want to contract with higher priced options, I will never understand). If you find an option that is far cheaper but is out-of-network, talk to someone at your insurance company – they may be willing to write up a specialty contract just for you so you can use that option and save yourself and your insurance company a lot of money.

Diabetes is expensive. Look for the loopholes, use your resources…and you may be able to make it a bit cheaper for yourself, without sacrificing quality.