Dear Diabetes, I Quit

You can quit a job for any reason. You can quit school once you get past the state’s legal dropout age. You can end a relationship very easily and you can run away from home.

What you can’t do, however, is quit a medical condition. 

Today, however, I sure did try.

I like to keep a low-carb diet. It helps me keep my blood sugars in much better line. I’m not necessarily ketogenic since my main goal is to just keep stable levels and there are some non-keto things that don’t raise my blood sugars so I don’t worry about them (coconut palm sugar is one thing that comes to mind – it’s not on the keto list, but since I don’t need insulin to handle it I don’t give a shit). I’ve lost quite a bit of weight since having Baby Imp while on a low-carb diet, and I have actually grown to prefer the dishes that I’ve been making.

The thing about low-carbing is that it’s a lot of work. I make EVERYTHING from scratch – hell, I even make my own crackers. It isn’t exactly a diet for convenience. It takes a lot of preparation, thinking, planning, grocery shopping and a lot of time in front of a stove. Supper tends to be just a meat and some kind of vegetable because by the time 6 o’clock rolls around I’m running low on spoons and throwing something on the grill and slicing up some cucumber is easy. 

I’ve had one hell of a time the last three weeks. I’ve moved, set up a house, started at a new school and new job and got acclimated to a new schedule. I’ve also been through the living hell of going through the motions of getting a whole new set of prior authorisations for medication and doctors. I’ve been living with the constant worry whenever someone near me in class coughs or sneezes. I’ve been dealing with yet another a fungal infection on my leg and increasing chest congestion due to not having my immunoglobulin for two weeks (BIG NEWS SIDE NOTE got a month of Hizentra approved by the insurance, but they don’t like the specialty pharmacy chosen by my immunologist and they’re still missing some paperwork so this month is to get me through until they get all of the paperwork they need in order. Supplies are getting shipped tomorrow since the approval came around 4:30, will have them by Thursday morning).

Life is exhausting.

As time goes on, I have less and less energy. And today I finally had enough.

This afternoon, I quit diabetes.

And I didn’t leave a two-week notice either. I just up and walked out the door, flipping the bird over both my shoulders as I exited. I turned around in the doorway and disco danced to “Na Na Hey Hey Kiss Him Goodbye” for good measure. Then I shouted that he was an awful lover, because no quitting scene is complete without a dissolved office romance.

Freshly alive with my newfound freedom, I ran straight into the arms of my secret lover: Hardee’s. He enveloped me with the scent of his curly fry cologne and caressed me with sweet words of encouragement. “It will be all right,” he whispered in my ear as the bag was passed through the window.

So I went home with my carbohydrate bomb, the ease of simply ordering lunch giving me the energy to go on. And I sat down. And ate.

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I even ate the cookie.

But, alas, despite my officially divorcing myself from diabetes, some of it still stuck around. Like I still went for the pump when eating. Because it’s only second nature.

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That’s about four times my average daily carbohydrate count…

And I found myself running into a problem.

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You shall not pass.

I purposely set my max bolus to 5 units because Baby Imp likes to grab at the pump, and it’s to prevent me getting an insane amount of insulin. I rarely take any more than 2 units in a sitting (and that’s only when my blood sugars end up high for some reason) so I never see that screen. Until today. I felt like a bit of a rebel, taking more insulin than I normally do. It was freeing, like the first time you go out on a date after leaving an awful boyfriend.

Soon the pump was shouting at me again, and instead of my usual “hey, I should take care of that…” response, it was more along the lines of “pfft, whatevs.” Because I quit diabetes today. 

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Nope, don’t care.

I ate everything. The burger, the bun it came on, the fries, I even finished the cookie even though it was highly disappointing.

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C is for cookie, that’s good enough for me.

138 grams of carbohydrates later and 8 and a half fattening units of insulin later, and I felt fine. Wonderful. Disappointingly wonderful. When you quit diabetes, you’re supposed to feel awful. You’re supposed to need to pee all the time, feel lethargic, and be reminded that quitting diabetes was a bad idea.

Although admittedly, I didn’t really quit diabetes. Like a codependent person, I came crawling back to it. I took insulin. I even checked my blood sugar beforehand (it was 71 mg/dL). And then I walked for like a mile and a half afterwards, which resulted in a 66 mg/dL pre-supper blood sugar about 5 hours later. For diabetes burnout, this was an awful example. For quitting diabetes, this was an awful example. But given how taking care of myself takes up every minute of every day and how dedicated I am to staying well, this was big. I consider myself lucky that the huge carbohydrate count in my meal didn’t end up with me having to bolus again even four hours later. While I didn’t check my blood sugar two hours afterwards (which is actually unusual for me, we can call that part of my quitting diabetes) I know by how I felt that I really didn’t get that terribly high. I don’t know why, but I didn’t. 

I can say though that in my temporary “fuck it” experience, I did learn a lot. Normally when I splurge on a high-carb meal, I am later consumed with a rather large amount of guilt and a feeling of failure. It was nice to let loose without the down feelings that followed. That’s not to say that this will end up becoming an everyday thing and that I have completely fallen off the wagon and am being dragged by a rope tied around my ankles. Supper tonite consisted of pork chops and a salad with low-carb ranch dressing. It seems that old habits die hard, although admittedly this is an old habit that is a good thing to keep around.

I will admit that I really don’t know what diabetes burnout feels like. Yes, I get sick of having it and I get frustrated and occasionally say “fuck it” and end up in a Hardee’s drive-thru. I’ve eaten whatever I wanted and not cared. I even spent a good 10 or so years not checking my blood sugar at all. But I’ve always taken the insulin, which is often the most difficult thing for someone with diabetes to handle. The thought of being constantly held captive by a needle or a pump is frustrating. But that is the one thing that I never really had a problem with. After 18 years, insulin has been second nature. I can honestly say that I don’t remember life before I did it, and even though I was 11 when diagnosed pre-diagnosis life and post-diagnosis life for the most part are one in the same. I hear about people experiencing diabetes burnout and books have been written on how to deal with it, but I can honestly say that I don’t understand it. When I burn out, it’s usually only for a day. When I quit diabetes, I walk right back in the door the next morning, sit at my desk and start typing like nothing ever happened.

I guess in the end I’ve accepted that there’s just no getting rid of it. No matter what I do, it’s always going to be there and I will always have to handle it. It’s a part of me and who I am, and that’s just that.

Dear Diabetes,

I try to quit you, but you’re still here. May as well have a beer together and keep working things out.

Love, Lady Imp

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Change for Overall Good

The June 18th DSMA Open Chat was the first one I had missed in a while. So when the Blog Carnival put forth a question from that chat, I jumped on it. The question is, “If you could change one thing about diabetes, (besides not having it), what would you change? Why?

I will admit, I actually had to think long and hard about it. Diabetes has been a part of my life for so long, it just seems like that’s how life is just supposed to be. While most other people don’t understand what it is to have to inject a life-saving drug, I don’t really understand what it is to not. Since not having diabetes was off the table, I was a little stumped.

I was reacquainted this morning with a struggle I had last year with a diabetic supply company, and that serves as inspiration for the one thing I would change about diabetes: I would make it so that health insurance companies use medical decisions instead of profit margins to determine what they will cover and they allow me to decide how to go about treating the diabetes and what devices to use instead of telling me what I can and can’t have.

I was recently eligible for a pump upgrade, and I was really excited about the possibility of getting my hands on the Medtronic 530G. This pump works with CGMS to automatically suspend function and emit an obnoxious alarm whenever your blood glucose gets below a set level. I have had problems my entire life with the Dawn Phenomenon, and I thought that maybe this might be my answer. I was ready to have day after day of data so that I could use it to adjust my pump, stop my blood sugars from crashing in the middle of the night, and stop my liver from spilling its reserves and waking up with an astronomically high blood glucose reading. I was ready to get the next step towards artificial pancreas technology.

But, my insurance company rejected it. And why? Because they don’t cover the CGMS supplies. To them, testing your blood sugar manually is enough. To them, the cost of CGSM supplies are way too expensive, and that cost outweighs the benefits from it.

My thoughts are accurately summed up by the fearless leader, Captain Picard:

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This is worse than dealing with the Borg

While I was disappointed, I wasn’t entirely surprised. Medical care in the United States is all about one thing: money. It’s not about healthcare, it’s not about keeping people healthy, it’s all about keeping shareholders happy and costs down for taxpayers. While I don’t necessarily object to the latter, I do object to it when it comes at the cost of helping people with chronic illnesses live long, healthy lives. Because the government hasn’t quite understood that when people live longer, they pay taxes longer.

In reality, two things need to happen here: drug companies and medical supply companies need to lower their prices, and insurance companies need to STFU and pony up for it. Now, as the child of someone who spent his working days writing grant proposals, I am well aware of the cost of the research that goes into these devices and medications, as well as the cost associated with producing them. I am very well aware that these companies need to turn a profit to keep their own investors happy. But things like CGMS have been around for ages now, why on earth do the sensors still cost something like $450 a box? Why have we not recouped the cost of the initial research, that was surely incredibly costly, years ago? Why are the prices still so high? You can’t begin to convince me that Medtronic had to put hundreds of millions into developing the Enlite sensors, they came off the prior Sof-sensor model (which you can now get for less than half the cost of the Enlites, but I digress) and looks like they only contained a few design tweaks as well as increased accuracy. I wouldn’t doubt that a couple million may have gone into the upgrade, but for what you’re charging people for these things ($473 for a box of FIVE without insurance), you should be able to get the price down here pretty quick.

I’ve taken an economics class, I know the laws of supply and demand – and these suckers are highly sought-after and people will pay anything to get their hands on them. The demand is relatively inelastic…but if they were to lower their price, they just might get a FLOOD of people buying them – insurance companies as well as the uninsured. Lower the cost of the Sof-sensor to $100 a box and I just might consider paying out-of-pocket for them (since that’s what’s compatible with my Revel). Or maybe if Dexcom lowered the cost of their products, I would be inclined to buy theirs and carry the two devices. The G4 will alarm me as well if my blood sugars are off, and since all the Revel is capable of is alarming me just the same just keeping it in one device, I would rather go with the more accurate CGMS system.

Either way, I would love to have one. I would love to have a continuous record of my blood sugars. I could keep a much better eye on the pump, and spot changes as I go through the ups and downs associated with the IVIG. But OH WAIT. The sensors cost an arm and a leg, the transmitters cost an arm and a leg, and my insurance won’t cover it. So here I am, wanting a piece of equipment that I can’t afford that I think would greatly improve my life, and I can’t get it because my insurance company won’t cover it, nor the supplies needed.

So here I am, having my medical decisions decided by the free-market system and a team of economists. Two things that have no expertise in the medical field, nor should have any sort of input into it. But these things dictate my medical decisions, they dictate how I manage my diabetes, and they dictate my life. These two things that shouldn’t have their fingers in my medical needs.

I’m starting to sound like a bit of a Republican here, but that’s not what I’m aiming for. I’m a bit of a fan of Obamacare, primarily that I now cannot be denied for insurance because of my pre-existing conditions, I cannot be dropped from an insurance because of my $20,000 a month IVIG treatments and there are no more lifetime caps on care. And to be honest, I wish that the legislation had a little more teeth. I wish that ALL medical devices, including CGMS, were considered durable medical equipment so that they MUST be covered. While I will agree that the insurance mandate is one thing I’m not sure I agree with, I’m required by law to carry car insurance despite never having filed a claim ever and I don’t have a problem with that. I suspect that we will get to the point where carrying health insurance is a known necessity just like car insurance.

Now that I’ve gone on for quite a while and have spent about an hour composing this blog entry (an hour that included a rather long bathroom break, to be honest..), I’m going to sum up my point: as a diabetic, I wish that health insurance companies didn’t suck. And I wish I had a Dexcom G4. In neon pink.


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://diabetescaf.org/2014/07/july-dsma-blog-carnival-4/

 

Take Two

Went in for my second IVIG therapy today, and it was a vastly different experience than my last one. Instead of curling up in a ball, sobbing, shivering and in quite a bit of lower back and knee pain, I made it through this round without a hitch. No pain, no feeling of cold, not even a headache. I still have yet to develop one, which is amazing. My mother thinks that it’s because this time around my body is a little more used to it. A lifetime of zero immunoglobulin and then suddenly pumping 25mg of the stuff in…makes sense that it made me feel awful.

However, what did make me feel awful…how about some serious high blood sugar levels. Woke up well over 300 this morning, so I shot up via syringe. Added a bunch more before breakfast mostly because I mistakenly stacked doses, but knowing that I was fixing to be pumped with 5% dextrose solution, I didn’t worry about it. Ran some errands, found that my blood sugar was high again, went to the bathroom and discovered that my set had come disconnected. So I snapped myself in, bolused through the pump and figuring that everything was fine, went on my way.

I spent the rest of the afternoon pumping insulin through a syringe until I ended up logging a 403 after a supper that consisted of carb-free crab cakes and sauteed zucchini that could not have had more than 2g of carbohydrates in the entire meal. So I decided the site had gone bad after less than 24 hours in, so I went to change it out.

Well, that explains a lot…

Yup, the cannula kinked. That happens an awful lot. It makes me sad, since it makes it so that very limited insulin comes out of the system, sending blood sugars through the roof. So, I sighed, and busted open the box of Medtronic Mio infusion sets that I had received in my last order because I had heard that they didn’t kink as much and I finally remembered to change. Added bonus, they’re bright pink. So now that’s in and I’m hoping that my blood sugar will come back down.

But all in all, the infusion was a success. Minimal complications, and the cough I had been developing the last week has magically disappeared. With any amount of luck, over the next three days my lungs will clear out and I can actually run. Which would be excellent, seeing as I’m doing my first 5K on Saturday.

I will say though that while I don’t exactly look forward to IVIG sessions, I do look forward to feeling well afterwards. Never before had I known what it was like to feel healthy, and I’m well on my way to feeling completely normal for the first time in my life – or at least as close to normal as one can feel with type 1 diabetes. I have always wanted to be able to run, and my lungs always burned like fire whenever I did. Since starting IVIG, I have been able to do it with minimal chest discomfort – in fact, the pain comes more from my out-of-shape thighs and the knee that I had an ACL reconstruction done on just before my 15th birthday.

Today, I feel like a whole new woman. And I’m looking forward to going out and exercising tomorrow. That will be my last run/walk before the 5K. And I can’t wait. 🙂

Dancing With Lady Luck

As though the pump failing yesterday wasn’t enough of a scare, Lord Imp got out of bed at about 3 this morning to close the window because he found it to be quite chilly in the room, then got back in, put his arm around me and distinctly said “baby, you’re pretty warm.”

When you have an immunodeficiency, those are quite possibly the scariest words you can ever hear.

So I got out of bed and tried to swallow. Yeah, that hurt. Now my throat has been hurting upon leaving bed for the last few days, but it’s kind of abated as the day went on, so I didn’t think anything of it. I also had a raging headache and my mouth was dry, so thinking I had a high blood sugar level, I went and checked. Result: 111. Okay, it’s much higher than I like, but that’s not the issue here. So figuring I was dehydrated (again), I went and grabbed a glass of ice water. Lord Imp, bless his heart, got out of bed and found me a thermometer. Taking your temperature after drinking ice water isn’t the brightest idea, it came back in the low 96-degree range, so I went back to bed with the intent of double-checking in the morning.

I woke up completely unable to swallow and my right ear hurting. That’s no bueno. Especially when you’re an hour and a half away from the immunologist’s office.

So knowing that your body temp lowers when you’re asleep, I waited about an hour to take my temperature, and it was normal. So I called up the office, told them my situation, and found out that it just so happened that he was in the satellite office just up the road from where I was.

Lady Luck is sucking up to me, isn’t she?

So they contacted him to see what he wanted to do, and I was told to come in. Turns out nothing’s looking infected, but he had no doubt that I wasn’t feeling well and that what I had was most likely viral, so I got ordered to bed for a little R&R for the next couple of days as well as prescribed amoxicillin just in case I don’t improve. Which I had him do as a liquid because I have a tough time with those pills to begin with, swallowing them now is out of the question. So I left the baby at her grandma’s house and now I’m here in bed.

I should probably be doing schoolwork. I’ll get on that here in a few. I know it’s late, but I spent most of the afternoon sleeping, I can handle this.

And to update on the insulin pump issue…the new battery cap came in while I was on the phone with my mother, so I was able to get her to put it in for me. It didn’t work. So I called up Medtronic and they’re sending me a new one, should arrive before noon tomorrow. I also found out that I am able to use my monitor to transmit my pump settings to CareLink.

You have GOT to be kidding me. Thinking that I needed the USB transmitter I have been putting off ordering it because I didn’t want to spend the $60, and all this time I could just have been using the damn blood glucose monitor???? Sonofabitch. Had I known that, I would have been using it this whole time.

I would also have my pump settings backed up.

ATBEPIJT3UP9TEWBUSGNLKGWJPOTWEPOTEWHIO. That’s me rage pounding on the keyboard.

I went into CareLink, and lo and behold, when I clicked on the Minimed icon, it brought me to a page asking what I was using to upload the settings. And there was my monitor, already clicked. *le sigh* Well, I’ve learned my lesson. Granted, I’ve learned it the hard way, but it’s been learned. From now on, I’m uploading the settings. Once a week. So that if this ever happens again (and I hope to hell it doesn’t), I am prepared.

EWIHPATWEIHOGPIG9UTRU9TRU9TE.

Complete and Total Freak-Out

Nothing makes your heart jump into your throat more than looking down at your insulin pump and seeing this:

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Ohhhh shit.

That folks, is what you would call a blank screen. That’s not what an insulin pump is supposed to look like. It’s supposed to have the time and the battery level and the level of the reservoir all nicely along the top. This folks, this is a completely malfunctioning pump.

Cue the urge to scream.

Of course, this had to happen when I was at work, half an hour away from my trusty 722 that has managed to keep me alive since 2009. At work, when I’m surrounded by people who think that having a piece of equipment that your very life depends on fails is something to joke about. Were I at home, I would have just grumbled, uttered a few choice four-letter words, called up the endo for my last pump settings, put in a few tweaks, reprogrammed the 722 and called the nice folks at Medtronic Diabetes support.

But I wasn’t at home. I was at work. With only one extra Energizer. Which got put into the pump to see if that was the problem. And, nothing.

So, shaking and trying not to start crying I Googled the Medtronic support number and gave them a call. And got fussed at twice for talking too loud.

Umh seriously folks, if you were in my shoes right now, you would be freaking out too. Not getting this fixed means I’m dead in 5 hours.

The lady at Medtronic went through the usual steps, and nothing. Batteries were changed (I found a few Duracells in the office, still no response), I checked the casing (still clean as a whistle), nothing. They’re sending me a new battery cap.

I’ve tried two different battery caps in that thing, and no response. Both of them are working fine in the 722. I don’t think it’s the battery cap but hey, I’ll take me a backup just in case if you’re gonna send me one.

Fortunately, I had thought this morning to throw a new syringe into the little bag I carry extra supplies in, so I was able to inject to keep going and I finished out my shift. Turns out I ended up injecting too much and I ended up crashing, but I was able to at least get enough insulin in me to keep going for the two and a half hours to get home and get hooked up to the old pump.

That syringe saved my life. And I should probably replace it.

I had to call up my endo for my settings from my last appointment. The settings that she told me to write down when I was in her office two weeks ago and keep a hard copy of somewhere in case my pump crashed. Well now don’t I feel like an idiot. Especially since I know my settings are now NOWHERE near what they were two weeks ago, my total basal is almost a full two units lower than it was two weeks ago. Fortunately, I’m in my settings often enough to have a decent idea where I was at, and I was able to get something at least close to where I was.

I know my endo is so doing this right now though: Told You So Song. Which I would embed in this but I can’t figure out how.

The good news is, in the end I was able to get home and hooked up to a new pump, and without going into DKA. The highest BG I saw was 173. Way higher than I like, but given the circumstances I am incredibly grateful for it being so low. The situation could have been extremely bad and I would have ended up in the hospital on IV and surrounded by doctors shaking their heads at me.

Instead, I am now on my way out the door to the hospital for my PFT and CT. Which I must say I am not looking forward to at all either…

P.S. All this excitement has left me with a very limited spoon supply…ugh.