In Time

Time is a funny thing.

If there is something fun planned for later in the day, time seems to crawl, making the day seem extremely long. This also applies if there isn’t much to do. And when we have too much to do, there doesn’t seem to be enough hours in the day. We are simultaneously encouraged to “live in the moment,” “take time to smell the roses and enjoy,” and “get somewhere yesterday.” Our morning alarms keep us on track as well as provide a hindrance to something more important, like sleep. We are also reminded that we have a finite amount of time to make something great of ourselves, so don’t waste it by being anything less.

As a PWD, time is also of the essence! It’s recommended that we change our infusion sets every three days and our sensors every six. Our insulin, once opened, only lasts 30 days, but its effectiveness is dependent on the elements, and we discover this over time with high and other erratic blood sugar results.

We are advised to wait 15 minutes after treating a low with fast acting carbs, which can feel like an eternity. And we spend another two hours (or two days) reconciling the inevitable rebound from said low blood sugar. But we can’t over-correct that high blood sugar because our insulin has an active peak time of anywhere between 2 to 6 hours. So that 300 mg/dl is just going to have to wait, isn’t it? (It doesn’t – rage bolus away.)

Our blood glucose meters have gone from taking 2 and a half minutes for a result to 5 seconds or less. Yet we still wonder if the number it pops out is accurate enough to dose a meal we should have bolused for 20 minutes ago.

We have the technology to have our sugars tested every 5 to 15 minutes, but we need to calibrate the technology every 6 to 12 hours to maintain accuracy. Nevermind that we can only calibrate three hours after a meal, when a blood sugar is stable, and when there is little active insulin in the system. So we spend our time planning our calibrations and smack ourselves when we miss the perfect opportunity to do so by about 15 minutes. We also need time to change out sets, sensors, faulty insulin vials, lancets, test and re-test when we don’t like the result… all while being told that there is too much available out there to make diabetes more convenient and we have no excuse to not live our lives like a “normal person” would… except when we try and our A1Cs reflect that.

We spend hours, days, and months fighting with insurance companies to approve the care to give us more time on earth, yet they take their sweet time figuring out if they want to pay for it.

We take risks with time, guessing that 18 units left in the pump will get us through a 10 hour work day… until your co-worker brings in cupcakes. Damn. Let’s not forget about the time and effort required to have a “quick slice of pizza.” Spouse ordered Chinese food on a whim? You’ll pay for convenience later. Or explain, for the third time, why you just can’t partake in it.

We get told that our time will be shortened if we don’t take care of ourselves. That diabetes kills. Yet we see other T1Ds living well into their 90s, which means they began life as a PWD on some of the earliest technology and medical advances available. (Which wasn’t much – but they still survived.) Maybe time really was on their side. Then we laugh half-heartedly at how many times we’ve been told there will be a “cure” in 5 to 10 years, yet wonder if there will one day be any truth to that statement.

We try to manage our time to plan for possible spikes from high-fat meals, over-correction crashes, exercise fall-out, travel, stress, sickness, and well… breathing. But sometimes, even the most neurotic planner can’t expect to time doses exactly to accommodate whatever bricks are thrown at your ideal CGM flatline.

And if we spend too much time thinking about the time it takes to try and be healthy, we kind of go crazy. So we ask for the support of others who advise us to take just one day at a time.

 

 

[Alright, alright, fine… I’ll swim back to the shallow end of the pool next time… ha!]

Friday Five

Some bullet points for this Friday.

  • I feel like I’m slowly deteriorating. Last night, I left job 2 early and seriously considered crawling into bed at 9:30 pm. But forced myself to stay awake a little longer so I could visit with my hubby, who I hadn’t seen since Wednesday night. Between wanting to hide under the desk at work and take a nap and the epic lows that just don’t seem to quit, I’m feeling rather beat down. In fact, our studio director, who returned yesterday from maternity leave, made the comment that I looked like I could fall asleep standing up. Yeah… I’d say it sucks to be a female every so often.
  • I’m at the point where a juice box, 4 glucose tabs, a Cliff bar with 18 grams of carbs, and 2 Starbursts don’t bring me out of the 60s in 30 minutes. How I managed to count the studio’s cash last night is beyond me. And when I felt safe enough to bolus for the added snack, I dropped to 56 three hours later.
  • Before you start urging me to pee on a stick, apparently early symptoms of pregnancy and PMS are very similar. Before I got put on the Pill, I used to get so sick, I’d have to skip classes. My blood sugar control wasn’t even close to what it is now. The only sure sign, I’ve been told, of being knocked up is that missed cycle. Which isn’t due yet…. But I really wish it would make up its mind.
  • To add to my misery this week, I got a phone call from my insurance company that my former employer was no longer using them and that my medical benefits et al were cancelled effective June 1. Turns out, my old firm just switched vision and dental providers, but somehow this got translated into canceling the entire plan. It should all be worked out by the end of the day, but that’s not something I want to deal with right now.
  • Today is also my last work day at the studio for two weeks. Hopefully I’ll be able to get some rest and work a more concrete schedule at my full time job… Which is proving to be an exercise in holding my tongue.

Hope this weekend is better. Happy Father’s Day to all the DOC dads and father figures and pet parents.

How am I supposed to drive home now?

20130610-173625.jpg

I have my CGM vs. meter debate. One says I’m 136 and trending down… The other says I’m 196. An hour later, I get this. So what’s more accurate? So my trials and tribulations continue. I change jobs and suddenly my control goes out the window.

A few ideas:
1) I’m more stressed out than I lead on: new job and environment, new people to please, another showcase at the end of the month, working two jobs and 12 hour days, competing at the end of July, losing my dance home… Yeah I guess that could effect things.

2) I’m hormonal. PMS never really affected my blood sugars THAT much, or maybe because I’ve been running lower than usual, I notice spikes into the 250s a little quicker. And then I get sicker if they don’t come down quick enough.

3) I’m knocked up. But… Don’t want to jinx anything. It’s too early to bust out the Clear Blues. But random spikes into the 300s just don’t happen without me actually enjoying something sugary and delicious. (But… It did help to change the infusion set.)

Some Days Are Just Bad

20130607-064638.jpg

Or nights.

Dude, seriously, WTF happened? I was fine all day and then at like midnight, everything went to hell. And I’m STILL fighting with them.

Site has been changed and SWAGs (scientific wild ass guesses) are being administered. If it continues, I may just start with a fresh vile o’ meds. Y’know, take advantage of my free drug coverage while I can.

And to think I was complaining about all my lows just two days ago.

Happy Friday?

An Island of One

desert_island

First thing: I’m coming off of a 12 hour day, so my post might be a little loopy and disjointed. I attempted to reconcile some accounting records at the studio tonight and numbers started blurring together, which would help no one.

But yes! A 12 hour day. Which means that I finally landed a full time job after two months of interviews, resumes, and false leads. Now that I’ve been back in the workforce, it’s been a weird adjustment. I forgot last night as the clock extended beyond 11 pm that I had to be up at 6 am today and that it was going to be a long one. (But SYTYCD was so good!)

I’m essentially an Executive Assistant to an off-site Association. The office I’m in actually staffs about 14 different Associations. “Wearing different hats” really does come into play here. Our admin assistants that answer the phone answer calls for each organization based on the Association that pops up on caller ID. For now, I’m in charge of one association.

Being that everyone has their own organizations to tend to, it’s not much of a “team environment.” Don’t get me wrong – if something needs to get done, people will pitch in from what I can gather. And everyone seems to have a small hand in everyone else’s client’s business. For the most part, people leave you alone for the day. My office mate sits two feet away from me and barely says a word. (I’ll give her some credit today – we started a couple conversations.) Everyone does lunch on their own. People work their own hours. It’s a fairly autonomous office where people just work. You’d think I’d be enjoying it more, however I suppose it’s too early to tell.

The biggest gripe I had about my last job was that erry’one was in each other’s business. And the whole “we function as a team” ideal was taken too far. Look kids – I’ve been in those group projects in college. Someone (read: me) always gets stuck doing the most work. I did a lot of work at my old job by myself and my co-workers found that off-putting. So I found an excuse to quit by changing careers. (We all can see where that led me.)

My big issue now is that no one has really asked me about the whole diabetes thing. I don’t hide the fact that I am at work either. I check constantly. My CGM makes all sorts of noise. I asked for the medical benefits outline at Orientation because I was curious about what my supplies were going to cost me in 90 days. (FYI – $100 for a 90 day supply. Ughhhhhhh. I’m gonna miss my old coverage.) At my previous association job, they called meetings every time my regiment changed… which was a bit uncomfortable, but whatever. At the PR firm, my office mate grew up with a T1 mother and my old boss was a former EMT, so I was relatively safe. And the studio has known me for so long that I just offered a refresher course in diabetes management. Here? Not much of anything. I’m sure it might come up if they bring out a birthday cake, but nothing so far.

I don’t remember what I’ve done in the past. Usually I had to explain my condition to bosses because it meant that I required a set lunch time and that brought up the follow up questioning. Or I had to explain why I was busting out syringes in public.

Now that I’m relatively invincible, treatment-wise and as an employee, I’m not really sure how to bring it up. People need to know what to do in emergencies but I don’t want to come across as a special case that people need to worry about. Generally, people don’t have to, but with my strange lows creeping around again?

I’m sure I’ll get over it. I’ve only been there for two days. In five days, I might put a sign on my forehead.

Could I Be Anything Else?

8702009713_cd5e5f714b_o

It’s Friday! And I’m getting ready for vacation! Woo! Since I’m so far behind on packing and so forth, I may not get to post my last two entries. Oh well. But I wanted to address today’s prompt, and maybe one other as a bonus.

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

Yikes. This one is heavy. I debated about throwing in a wildcard response today because I just can’t bring myself to think about it. I have friends with chronic asthma, have worked with children with autism, and watched my grandmother, mother and husband all undergo cancer treatments at the same time. Given that I am also at risk for a multitude of other health oddities such as heart disease, nerve damage and amputation, thyroid disorders, kidney failure, etc… I don’t know if I’d want to switch places or add to my current ailment.

But let me look at it this way. What if I were a Type 2 diabetic? Assuming I started with nothing and wasn’t granted the 30 years of knowledge during this switch, what would that be like? Would I have this due to stepping into the wrong end of the gene pool? Was it because my diet is terrible and it was just meant to happen? Am I a child or older adult? Am I going to be put on pills or can I control my blood sugars with just diet and exercise? Am I overweight? Underweight? And do I care?

See, with T1, I can’t blame diet or obesity or any other scapegoat that the media wants to feed us. Type 2 diabetes is, sadly, the  “illness du jour” that is plaguing society with generalizations and misinformation about all Types. It’s the butt of jokes on the internet, used as a representation of how unhealthy our country is eating. It’s a thorn in the sides of T1s who constantly hear “well… you should just eat better” comments at the mention of diabetes of any sort.

With T2, you’d almost need a thicker skin because you’re scanned by the critical eye, judged for your “poor choices,” and your lives are turned into a three ring circus on reality TV and documentaries. While it’s getting a fair amount of attention, I don’t know if I’d want to be in that kind of a spotlight – one that helps define what’s wrong with the American diet, even if your own personal diet is just fine. So I count my blessings that I’m simply “just a T1.”

Friday’s Thought: Hypo-Tasking

A PSA.

It’s not wise to try and call your job recruiter back while treating a 58 mg/dl. Generally I function semi coherently while that low. Today, I thought it would be a great idea to drink my iPhone and try to listen to my voicemail on my glass of OJ, thus resulting in a mess on my kitchen floor.

The recruiter didn’t really have much to say so I probably could have just waited to call back. But I’m not one to wait.

Happy Friday I guess.

Shots were never this complicated

150018_10150095696731257_2810350_n

I was a child with diabetes in the 80s so I had my fair share of analog technology to assist me with control. Ketone strips that were used to find high blood sugars rather than glucose monitors that gave results in 5 seconds or less. And if you had a glucose monitor, it weighed 2 pounds and took approximately 2 and a half minutes to produce a result after multiple steps. (And a crap ton of blood.) Then there was my insulin regiment of NPH and Regular, given multiple times a day in a syringe. No continuous glucose monitors. Insulin pumps were in their very early infancy. You just lived with what you had and the meager technology that was available  was what you used.

But it was so simple! Administration was a guarantee with shots. Whether the meds worked or not were a different calamity, but at least you physically drew insulin from a bottle and injected it somewhere.

Now days, I have to wonder if my high blood sugars are from a meal, a lack of basal or some sort of pump malfunction. (And that’s just the basics for where a high could come from.) My life seems dependent on batteries moreso than a correct basal rate.

I say all this because I finally met with Medtronic again this morning. My CGM transmitter is a dud. I need to send it back after I get my replacement tomorrow. This is probably the reason for most of my CGM woes over the last month.

This is the third Medtronic device I’ve had to return and have replaced because of some technical glitch. (Though, now I’m wondering if I needed my second pump… not that I’m complaining.)

Is this normal? Or do I just have really crap luck with technology? I mean, I work on computers all the time and those don’t crumble to Blue Screens when I walk through the door. I don’t enjoying breaking my diabetes tech. I try not to do it on purpose and I don’t think anyone does. But seriously… this is getting kind of ridiculous. Shots wouldn’t give me calibration errors or beep incessantly. They just did their job and were disposed of.

When did this become more complicated?

Flying High/Raving Mad

Reblogging because this is apparently a hot topic in the DOC today. Between this and Kerri’s post, I don’t think I need to add any more to the conversation, other than I’m right there with them. I’ve had my own share of TSA experiences with my insulin pump and am dreading the addition of my wireless CGM. Thankfully, I don’t fly a ton anymore but I can’t avoid the occasional trip outside my home state.

The only way to make changes is to spread awareness of the issue. I don’t feel I need to justify my required devices to a government agency umpteen times every time I fly. I’m all for safer plane trips, but at least make it consistent. Don’t tell me to just throw my pump on the conveyor belt because it’s safe for YOUR XRay machine. (Nevermind Medtronic has stated that this is not appropriate.)

theperfectd™

Through TSA’s layered approach to security, and to align more closely with International Civil Aviation Organization standards, effective April 25, 2013 TSA will allow knives that do not lock, and have blades that are 2.36 inches or 6 centimeters or less in length and are less than 1/2 inch in width, novelty-sized and toy bats, billiard cues, ski poles, hockey sticks, lacrosse sticks and two golf clubs as part of their carry-on baggage. This is part of an overall Risk-Based Security approach, which allows Transportation Security Officers to better focus their efforts on finding higher threat items such as explosives. – Statement on the TSA’s website

Apparently insulin pumps and CGMs fall under the “higher threat items” these days.

I’ve flown a lot in the last 20 years.

Pre-9/11, you could sprint down the concourse to your gate, wheezing loudly as you handed your ticket while hiking your overstuffed carry-on…

View original post 960 more words

The New Normal

I’ve heard the world “normal” creep into my every day conversations more recently. What is “normal” anyway?

For example, I’ve stumped Medtronic and my CDE over the issues I’ve been having with my CGM. My attempts to get answers are usually met with blanks stares and question marks. It appears my sensor only works when it feels it’s convenient. (Yes, I’m convinced it has a mind of its own.) Switching out the entire pump mechanism didn’t seem to improve the situation very much. My sensors still peter out after 3 days and never seem to fully be in line with what I’m seeing on my meter. “Oh! Maybe you need to be retrained on how to insert a sensor. Or maybe it’s a bad box of sensors? Or maybe the sensor is bad too? We have no idea! We know you are frustrated with all of this… but rest assured, this isn’t normal.”

Well, what about the fact that I still continue to drop from a meal bolus nearly 4 hours later? “Oh, that can’t be right. It’s not normal to continue dropping from a meal bolus that late. It must be something else.”

Or how about that my postprandial readings are still not “pregnancy ready” even after attempting to alter my diet, insulin distribution, and so forth? “Well, maybe you just aren’t normal, Jen. Nobody said you had to be perfect.”

So what is normal?

I like looking at stock photography on diabetes products to figure out what normal should be for me.

Perhaps it’s the perfect blood sugar found on just about every One Touch meter box.

photo(5)

We’re all familiar with that one right? Trying to catch that famous reading is like trying to catch a butterfly on speed. Somehow, I snagged it. It’s here for all to admire. However, 104 is actually a high fasting reading. So is this really normal? Or a fancy way of saying you should be averaging this?

Or take a look at the collateral I got with my CGM.

photo(6)

See. Even you can enjoy happy, stress free relationships if you use this product. All diabetics will come away smiling while enjoying a walk on a sunny day. Nevermind that you are relying on a battery powered device to keep you smiling, happy, and alive. Being connected 24/7 probably doesn’t appear normal to most, but we should think we will still be classified as normal if we use these products. (Whipping out syringes in public is also probably not considered normal.)

My personal favorite stock image is on my sensor box.

photo(4)

Because everyone using a CGM can totally eat carrot cake dressed in white while sitting on a white couch. You can totally lead a normal life until the sensor starts beeping at you because that carrot cake has a high enough GI to send you beyond your happy zone. (Also… who actually LIKES carrot cake?!)

This is probably a more accurate depiction of my normal.

photo

IMG_7478

IMG_7125

Okay, maybe it’s not all numbers, data, and prescriptions. I still have this.

My last ballroom comp...

So as we PWDs all strive for some sort of average “normalcy,” maybe it’s just easier to think that there is no normal. Alternatively, my favorite dancer from So You Think You Can Dance, Mark Kanemura, was once quoted on tour saying, “I tried to be normal but it really didn’t work for me.”

Not all of us will be able to enjoy that carrot cake without some sort of repercussion. (Though, if you enjoy eating it, by all means.) Not all of us will dance around in rhinestones and spandex either. My insulin issues, disdain for carrot cake and my obsession for glitter are what make my reality. The tricky part is not wanting to compare yourself, and your data, in an effort to seek out someone else’s normal.