Invincible Illness Week: It’s a Thing

Apparently. Hey – I’ve been kind of dry on blogging inspiration so I’ll take a prompt every now and then. Plus – these surveys are a good way to kill time. 🙂

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Type 1 Diabetes (and possibly, Trigeminal neuralgia.)

2. I was diagnosed with it in the year: 1982, shortly after my first birthday. (TN is still not quite confirmed.)

3. But I had symptoms since: I have no idea. I was barely a year old. I assume my parents weren’t really sure why their daughter was super sick and going through diapers like crazy, so – multiple trips to the hospital ensued.

4. The biggest adjustment I’ve had to make is: I’ve had it all my life, essentially, but I’ve changed treatment options multiple times. So going on a pump was probably the biggest adjustment after being on shots for 26-ish years. (And getting used to being connected to something 24/7.)

5. Most people assume: That I’m in great control because their grandma “always run high” or “that I have bad diabetes” because I’m on insulin all the time (there’s a good kind???) Or that if I’m moody, then I MUST need to eat something because I’m low. (I’m not allowed to be pissed off ever?)

6. The hardest part about mornings are: Waking up with a random-ass high or low blood for no reason can totally ruin your day.

7. My favorite medical TV show is: I used to watch House until it got weird. I watched ER and Chicago Hope a long time ago as well.

8. A gadget I couldn’t live without is: My pump and CGM combo. I have a love/hate relationship with it, but I’m dreading the day I may have to switch insurance providers and will no longer have the luxury of CGM coverage. (Which is why it took me so long to get it in the first place.)

9. The hardest part about nights are: Going to sleep with a high BG… or having a late dinner with a high fat content that you know will hit you later long after you’ve gone to sleep. The whole “do I over-bolus and risk crashing vs. waiting it out” debate may as well just keep me up all night.

10. Each day I take __ pills & vitamins: I used to be on a cocktail of pills and vitamins for no reason, IMHO. But now it’s just the insulin and Nuerontin when I feel my headaches coming back. (And a daily multi… most of the time.)

11. Regarding alternative treatments I: don’t really explore them, unless they are to alleviate symptoms. There aren’t alternative, non-chemical subs for insulin. But – for pain relief, I’ve saught out acupuncture and massage therapy. And I’ve found some interesting cold remedies on Pineterest.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. Though – that has it’s downfalls as well. Especially when hypoglycemia symptoms double as alcohol intoxication symptoms.

13. Regarding working and career: I try to keep it discrete and rely on myself a lot. However, it depends on the job. If the day involves a lot of activity and stress, I’m asked more often if I need to eat or take care of myself. But desk work is a bit different. I’ve also been asked to not give my shots in public at events, which was really annoying (and a bathroom is a much safer place!?). (The same boss that criticized me for doing so was over the moon when I got a pump.)

14. People would be surprised to know: That I don’t like a gift of sugar free candy. The laxative effect and strange insulin math I need to do to adjust for consuming it is so not worth it. I know you are trying to be thoughtful… but please, just get me the real stuff.

15. The hardest thing to accept about my new reality has been: Diabetes has actually been my only reality.

16. Something I never thought I could do with my illness that I did was: Dance. But the illness wasn’t exactly a factor in that equation. Eventually, I’d also like to “be a mom.”

17. The commercials about my illness: are often fast-forwarded. (I rarely watch TV live.)

18. Something I really miss doing since I was diagnosed is: I can’t really tell you… I was too young to really miss anything about a diabetes-free life.

19. It was really hard to have to give up: Once I started pumping – I gave up pants without pockets get really annoyed when I can’t find them when out shopping. I also don’t wear dresses and skirts that often anymore. The last time I tried to stick my pump in with “the girls,” I broke it. So…

20. A new hobby I have taken up since my diagnosis is: …everything?

21. If I could have one day of feeling normal again I would: I’d probably enjoy my food more as food rather than a quadratic equation.

22. My illness has taught me: about being a responsible human being. However, it’s also taught me to be neurotic and it showcases my TYPE A+++ personality (TM – someone awesome) quite well.

23. Want to know a secret? One thing people say that gets under my skin is: Wow – it must be really hard to be a diabetic. I can’t even imagine…

24. But I love it when people: Try to understand it to the best of their ability and when I feel like I can have an open conversation with a non-PWD.

25. My favorite motto, scripture, quote that gets me through tough times is: It could be worse…

26. When someone is diagnosed I’d like to tell them: It sucks and it’s an adjustment. But – you’ll do yourself no favors if you pretend it doesn’t exist.

27. Something that has surprised me about living with an illness is: How open my IRL friends were to learning about it. A number of them follow the blog on their own accord.

28. The nicest thing someone did for me when I wasn’t feeling well was: Ballroom teacher has delayed lessons, cancelled lessons last minute, or stopped them without docking time until I got back on my feet again, figuratively. It’s minor in the grand scheme of things, but his time is valuable as well and accommodations don’t always have to be made. But they are.

29. I’m involved with Invisible Illness Week because: Why lie? I needed a blog prompt.

30. The fact that you read this list makes me feel: delighted! Happy Friday!

Throwback Thursday #tbt

I wanted to try something to make sure I post something educational once in a while and people seemed to enjoy my trip down memory lane for the Blog Carnival last month.

Inspired by Instagram’s hashtag system, I present Throwback Thursday. (Cue the marching ants and twinkle backgrounds.)

As gimmicky as it sounds, I’m going to try it based on how much information I can find/how much I can remember about an old product used at some point in my diabetes care. It could be the technology I used, a specific treatment, etc. etc. I’ve been a member of the T1D Club for a while now, so it might be beneficial for the crowd newer to the table to see what life was like growing up.

Today’s submission – the Glucose Tablet.

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Those of you who have been around the block a few times know what these are. (And are maybe cringing at the sight of them.)

BD produced some of my earliest forms of glucose tablets. They were white, square tablets that were individually wrapped in blister packs, which I remember carrying around in grade school in my backpack. (So – maybe the late 80s, early 90s?) They were discontinued in 2009, making way for the current Dex 4 and my current favorite, Glucolift.

They were orange “flavored” and I once tried to write on the chalkboard at school with one of them. Seriously. If that’s any indication as to how they tasted… which kind of defeated the point to having them. If you were hypoglycemic, why would you want to treat it with something you despised eating? You were probably already moody enough.

I digress.

The benefit to these were that they were individually wrapped, so they didn’t spill (or melt) all over purses and backpacks, and each tablet was 5 grams of carbs, making the 15:15 rule easy to follow. Whereas, these days, a standard glucose tab is 4 grams [/math fail].

Did I eat a lot of these as a kid? No – I tried to avoid them if I could. My parents raised me on juices, fruit snacks, cake frosting and other hard candies to treat lows. I’ve mostly stuck to those as an adult. (Though – I’m too impatient for hard candy most of the time.)

In a pinch, however, I did have my fair share of these. Reluctantly, of course.

So that’s #tbt. What else would you like to see covered?

Friday Five: Multi-Media Edition

Hola fans! It’s Friday! Thank goodness. It’s the first weekend in a while that I have NOTHING planned. So I full intend to sit on my ass and watch movies for two days straight. Maybe. (I guess I’ll throw some housework in there too.)

1) I haven’t had a clean “install” of a sensor since last week, so I’ve been avoiding it until this morning. My last attempt was on no-no zone – the left side of my abdomen. I’ve never had luck placing a sensor there because of my rock solid abs 20+ years of scar tissue. I tried it Tuesday night and it never picked up a good signal, so it was out by Wednesday evening. It was bent in half.

2) I grabbed everything I could possibly need for my semi-long day today… except for a new vial of strips. I have two left to last me until 6:30 pm. I just started a new sensor. And I have a lesson later. I guess I AM going home at lunch.

3) Briley posted JDRF’s new PR video this morning. I thoroughly enjoyed what their creative team put together. Short, positive, and to the point. No dementors needed. (I’m looking at YOU World Diabetes Day.)

4) The studio experienced a bit of Murphy’s Law yesterday. It was the first day we were open under the new ownership and we were optimistic that things would go off without a hitch. It was also the day that ALL TECHNOLOGY FAILED. So – no credit card machines… no phones… no internet… I’ve never been so excited to see people write checks in my life.

5) Oh. This video. How can you NOT have a happy Friday after watching this?

A Strip Teases #DSMA

Let’s talk about test strips, shall we?

Blood glucose.  It’s front and center when it comes to diabetes.  It is how we get diagnosed and it is what we are trying to manage.  An important tool we use to manage our blood glucose is our meter and its strips.  But what happens if our meters aren’t giving reliable information?  Let’s explore that this month as we discuss a topic from the June 26th chat Fill in the Blank.  Weigh in on the following statement:

Test strip accuracy is important to me because______.

Short answer: Because we are too technologically advanced these days to make any other excuse.

First, a trip down memory lane.

I was diagnosed in October of 1982, shortly after my first birthday. (I got called an overachiever yesterday… gotta start early!) The technology that was handed to my scared parents was the equivalent of a typewriter in a room full of Macbook Airs. Heavy, clunky, and involved a lot of guessing.

The first round of test strips didn’t belong to a meter at all.

Urine Reagent Strips

These are Chemstrips (thank you Google Image Search.) They measured ketone amounts in urine. Ketones in urine are usually a tell-tale sign of a high blood sugar. If I had ketones, surely it must mean that my blood sugars were way too high and we must give me more insulin. Have I mentioned that I spent a lot of my early childhood in the hospital?

Along with these colorful test strips where the early blood glucose strips of the 80s.

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These test strips required enough blood to satisfy a vampire’s sweet tooth and only really gave you a range of what your blood sugar could be. They also required time – 2 minutes of waiting for a semi normal blood sugar reading and 3 minutes if you thought your BGs were high. You might as well try to download a 5 MB song on dial-up. It wasn’t exactly accurate either. As I mentioned, it gave you a range based on whatever color the blood left behind on those enzymes. Sandy beige and teal? You were 120 mg/dl. Pea Soup Green and Dark Teal? Hmmm… you are probably in the 200s. Black and blue? You are probably dead. Just sayin’.

Later in the 80s, I had this dinosaur.

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(From Diabetes Daily)

I’m fairly certain I had another machine before the Reflolux 2, but this is the one I remember. Again – I was probably 6 or 7 when I started using this on my own. (Editor’s note: this may in fact be the Accu-Chek II, but Google has been unhelpful.) This machine would take the test strips from above and read them into a more accurate number. Or – more accurate than the ranges provided on the side of the bottle. The machine, if I remember correctly, had some sort of elaborate coding ritual which involved taking it apart and it weighed about 2 pounds. It was also about the size of my dad’s hand. Huge. The strips still required the 2 minute wait time, but after that, you stuck it into Johnny 5 and waited another minute or so before it spat out an analog number. Thus, you knew what your blood sugar was. Nevermind that it varied greatly from your doctor’s machine results. (Which it often did.)

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Along with the bad hair and fashion of the 80s, the Reflolux went out of style, making way for new, smaller, less cumbersome meters. These meters had smaller test strips that didn’t require a tourniquet every time you wanted to test. Some even came in fancy colors and could easily fit into a purse. But, again, with this newer technology comes less than perfect results. We’d like to think that the numbers our meters are spitting out are accurate, but our A1Cs didn’t always agree, leaving us frustrated.

Now that we’re in the 2000s, we have a wide array of technology available to us. Insulin pumps that make administration easier and more precise than long acting insulins; CGM technology to alert us of spikes and valleys in our sugars and provide us with trends and patterns; meters that take 5 seconds or less to provide results; and really fast acting insulin. All items that should, in theory make our lives easier and our control more streamlined.

So what’s the problem?

We live in a society of instant gratification. If we want a song, we download it. If we want to map a roadtrip, we look on our GoogleMap app and it guides us. Want food? A drive through is around the corner. We like things fast, quick, cheap, easy and painless with the least amount of effort. We thrive on short cuts and if it’s “good enough,” it’s acceptable.

Apparently, the FDA agrees.

Per Strip Safely, a grassroots movement to urge lawmakers to push for meter strip accuracy:

“At a recent public meeting the FDA acknowledged1 that there are some 510(k) cleared blood glucose (BG) meters and strips that do not meet the accuracy standards for which they were approved. There is currently no clear course of action to insure people with diabetes are using blood glucose strips that meet regulatory requirements.2

And…

“The have-nots will be stuck with meters that met 20% standards several years ago but probably couldn’t meet 40% standards in post market analyses today.”9

Guys, this isn’t something that you should “get what you pay for.” The fact that my meter could be pushing out results that are 20%-40% off from whatever number pops up on screen is a bit unnerving.

I pay (well, my insurance pays) good money for those boxes of name brand test strips. I ran an experiment this morning.

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Two different, name brand meters. Two very different post-meal results. I’d be inclined to issue a correction bolus for the 205, but what if I were closer to the 189? With the extra insulin in my system, I’d flatline by 10 am. Can you imagine what generic test strips and meter results would be popping out? Sure, they are within 20% of each other, but when it comes to insulin dosing, that margin of error can mean the difference between grabbing my GlucoLift or spilling keytones.

We have so many pieces of technology available to us and so many advances in our care than I had when I first started out. Why does the FDA still think a colorful range of blood glucose results is acceptable? Let’s leave that nonsense in the 80s where it belongs.

This post is my July entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/july-dsma-blog-carnival-3/

ETA:

I was curious and ran a test when I got home using every meter I owned.

photo

Not horrible, however, surprised that the two meters that are essentially the same model came up with wildly different results in comparison. I also issued a correction bolus for the 175 mg/dl. Let’s see if I crash, stabilize, or rise after dinner.

June DSMA Blog Carnival

June’s Prompt: Regardless of which type of diabetes you have – T1 T2 or T3 – you probably use one or more diabetes devices on a daily basis.   For this post, when we refer to devices we mean blood glucose meters, insulin pens or pumps, and all other diabetes medications.  This month we’re going to revisit the May 15th chat on Diabetes Devices and really think about what we use.  We’d like to know:

How do you select the diabetes devices you use?  To others looking into new or replacement devices, what would be your best advice to someone shopping around?

It’s simple really. What will my insurance cover for me at little to no out-of-pocket expense or what can I get for free?

I’m a Medtronic Minimed user by default. My old HMO had a contract ONLY with Medtronic so that’s what I was ordered when it was decided that pump therapy was the way to go. So I didn’t even get a chance to research Animus, et. al. My insurance was going to cover a Minimed… the end.

Same goes for my One Touch meters. The HMO didn’t cover the Accucheck brand strips – so all of the fun meters I saw and wanted to try were unavailable unless I wanted to pay full price. And as a poor college grad, why the hell would I want to pay full price for anything when I could get it for 20% and or free?

My new HMO is a bit more flexible. Apparently I can order strips for my Bayer Contour Link with no problem or added expense pending I didn’t already fill a 3 month supply of One Touch strips.

That said, I wish I had done more research before blindly calling Medtronic and ordering their CGM. Yeah – I didn’t like the idea of carrying around two devices all the time, especially when I barely have the pocket space to fit one. So having the one inclusive device was very appealing to me. However, given all of the issues I’ve had with my Minimed CGM, I really wish I had just stopped, thought about it, maybe tried it out (which I wasn’t sure I could do), asked more questions, etc. But I think I was so excited at the prospect of even being able to get one for the first time that I just jumped on the most readily available option. (My old HMO also didn’t cover CGMs unless you were deemed “brittle,” which… I don’t understand why.)

I’m happy to have the technology that I do. But my decisions really come down to the bottom dollar. I’m stubborn enough to not want to pay an exorbitant amount of money for my care, especially if I can get something that works “okay” or “half-way decent” 85% of the time. I’m excited when things are covered at all.

If you are looking for a new device, and money is no object, kudos! Explore all of your options and figure out what works best for you and your lifestyle. Don’t want a meter that take more than 10 seconds to give you a reading? Don’t get one – there are plenty of other options out there. Check out websites, reviews from other users, call and harass customer care.

If money is an object, consult your medical insurance, HMO, and docs to make sure THEY haven’t already made the decision for you like they did for me.

This post is my June entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/june-dsma-blog-carnival-3/

Oooh… shiny

It's all new and stuff...

It’s all new and stuff…

I’ve moved up in the world, y’all. I got a GoDaddy.com deal on a domain name for a year and just went for it.

Update all your bookmarks so that they point to seejendance.com. You’re welcome. 😛