Invisible Disease Friday

I really needed a day off.

As each day went on, I had been getting more and more worn out, more and more unable to get up when laying down, more and more exhausted. So a couple of days ago, I decided that since one class was done and the other two were doing finals reviews, I was going to take today off, sleep in, be a lazy bum and not take care of anyone but myself.

Instead, I got stuck carrying the baby down the full flight of stairs that lead to my front door to take her to daycare so I could have a day alone. I got stuck going to campus and taking care of some missing equipment out of my drawer in chem lab. And out of the goodness of my heart I made a lunch run for Lord Imp, who is feeling crappy and I knew was going to need to eat.

And now all I want to do is cry. Because I don’t get to take care of myself and only myself.

All I wanted was 36 hours of not doing anything – not getting out of bed, not cooking, not cleaning, not doing homework and not taking the baby. Instead, I got out of bed at 7:30, struggled down the stairs, took care of the baby for a bit, took a nap, woke up and struggled up and down the stairs several times, struggled to get the baby changed and dressed, struggled to get her in the car seat and prayed as I teetered precariously down the stairs carrying her to the car. In the middle of all that, I had to deal with listening to Lord Imp bitching about how tired he was and how he didn’t feel well.

I really wanted to scream this, but didn’t. So I’m going to scream it here:

WELCOME TO MY WORLD.

I am tired ALL THE TIME. It is not uncommon for me to wake up and legitimately wonder if I have the physical capability of getting out of bed. It is not uncommon for me to not be able to move without an exceeding amount of effort. It is not uncommon for me to fall asleep in classes or want to take naps.

BUT I STILL GET STUFF DONE, and with minimal complaining.

I still do laundry. I still do dishes. I still make the baby breakfast and get her dressed. I still vacuum. I still go to class. I still study. I still do research. I still go to work.

EVERY SINGLE DAY. Despite feeling the same way you are (minus the congestion). My head is ALWAYS foggy. I am ALWAYS tired. And I am ALWAYS woozy.

BUT I STILL GO ON.

Don’t EVER mistake the fact that I am still plugging on without complaint as that I am fine. I AM NOT FINE. I am only moving because my options are to keep going or to die.

And I would kinda like to keep going.

The sad truth is, I’ve been taking spoons from the next day for a while now. And today I woke up with very few of them. And instead of trying to regain my spoon count, I spent today spending them.

I sent a copy of the Spoon Theory to Lord Imp. I hope he finally gets it.

</rant>

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The Smartass’ Guide to Handling the Food Police

So, I participated in my first Diabetic Connect Diabetes Education chat tonite, and it was a lot of fun. I always like to meet new people online (because we all know I have super social anxiety in real life, eek!) and the group was a kick. Tonite’s topic of discussion was handling eating during the holidays, and someone mentioned the thing that is always on the Top 10 Biggest Annoyances list for any diabetic: the food police.

You know who I’m talking about, those people who watch over your shoulder, asking if you can eat that roll, telling you to put down the pie and generally just being worse than your mother was 6 days after coming home from the hospital.

Every diabetic has come across at least on in their life.

Diabetic Connect has a very good list of ways to handle the food police, and they are most certainly very good and should be given a look by anyone who has ever found themselves in a position where people are questioning their culinary choices. But since I’m a snarky smartass, I really can’t see myself implementing them after the first round of being asked “doesn’t that have sugar?” six times is over.

You were warned

You were warned

So, in that vein, I now give you

THE SMARTASS’ GUIDE TO HANDLING THE FOOD POLICE

Snarky Responses to “You Can’t Eat That.”

1. Really? I thought I was the one going to college.

2. That’s cool, because you really shouldn’t be talking with your mouth full.

3. I think this pie would look way better on my ass than on yours.

4. That’s too bad, because these mashed potatoes are so lonely, they need a friend. Like the turkey I just ate.

5. For one day, my body can handle it. You, however, will always be ugly no matter what you eat.

6. Several peer-reviewed articles in Diabetes Care seem to disagree with you.

7. Good thing your insurance premiums/tax dollars are paying for my insulin pump.

8. Blame Obama.

9. I’m a piranha. They in the Amazon.

10. Silly me, I forgot you are an expert on diabetes care! Please, what can I eat?

11. Hold on, let me grab my towel and consult the Hitchhiker’s Guide.

12. You’re fired.

13. Taking a break from bothering your spouse/significant other/parent I see. How about you take a break from bothering me, too.

14. I need you to go outside and double-check that the dairy elves haven’t smeared the metal posts outside with ice cream again. It’s impossible to get off and I don’t want to spend the money replacing them again. The only way to do it is to preform a taste test. (Works best in cold climates).

15. Your ever-widening ass shows that you have no business giving me dietary advice.

What would be on your Smartass’ Guide to Handling the Food Police?

Low Carb South Park

I. Love. South Park.

I know, it’s a polarising show – you either love it or you think it’s stupid and vulgar. I am in the first camp (as I’m sure you can tell), simply due to the fact that they tackle some pretty serious issues in that stupid and vulgar manner that makes you really look at the issues in a completely different light – which oftentimes is quite necessary.

So I finally got around to watching the episode that aired the Wednesday before last, Gluten Free Ebola. I will admit that, as a low carb eating person, for the first time in my life I went into the episode somewhat cautious. But knowing that for the past what, 18 years, South Park’s MO has been “look at it one way and then another,” I kept going.

The male genitalia flying off did make me laugh way more than it should have.

In the end, Cartman has a dream where Aunt Jemima tells him that the pyramid is upside down. He calls up the USDA to tell them, and then they come up with this:

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Well it’s about damn time!

Now THAT is the pyramid how I see it. We’ll ignore the fact that it never was a pyramid to begin with but a triangle for a moment, and focus on the fact that even Trey Parker and Matt Stone know what’s up.

Fat is not bad, people!

Well, let me modify that to say that not all fat is bad. Trans fats, they’re still bad. Refined fats, still bad. Now, the ending scenes where people are eating steak with a stick of butter are a gross overexaggeration, but that’s South Park for you (although I will take this moment to say that steak is in fact quite tasty with butter on it – just not a whole quarter pound of the stuff). I also find it quite coincidental that the butter-and-steak party was thrown for the kid with diabetes. Sort of.

The point I’m trying to get at in my incoherent rambling is that it’s about damn time that low carb/high fat got a good show in the mainstream media. Studies are starting to come out that all those carbohydrates are bad, and that’s good too. I am the kind of person who does not think that there is a one-size-fits-all diet plan, but I do wholeheartedly agree that the “you must have a serving of complex carbohydrates at every meal!” mentality needs to go. I shudder when I recall what I was initially taught by my dietician as a child – I had to chose one starch, two for supper, and record them in what I will admit was a handy worksheet that made it easy. If I didn’t make choices from every recommended group, I got a proverbial finger shaken at me.

I eat a very balanced diet while on low carb. I still make things like biscuits and bread and cakes and cookies, just they’re all without grains and low on the carbohydrates. I can still have all the tasty and delicious sweet things, and I do still bake up a storm. I eat a ton of vegetables, and contrary to popular belief I do not make an entire meal out of bacon (I love bacon more than most people, but not that much). Almost everything I eat is handmade, there are very little processed foods, and I spend WAY less money on food now that I don’t get a burger and fries all the time and I never order a pizza anymore. I also weigh less than I did in high school and once again I now have to go buy more jeans because they all fall off my ass.

I also need a new belt because I destroyed the only one I own yesterday.

Anyway, I high five Trey and Matt for their bringing this to the minds of those who would likely not even think about it. South Park is the in-your-face voice that LCHF needs to get through to the younger crowd. Put down that multigrain muffin sugar-filled monstrosity (because muffins are nothing more than cake for breakfast) and eat a low carb, no sugar version. It tastes better, and is better for you too.

I have also decided that the ultimate way to know you’ve arrived is for South Park to make fun of you. I have switched my life goal to be from winning the Nobel Prize to having South Park poke fun at me. Or maybe I could have South Park poke fun at me FOR winning the Nobel Prize. Hmm…

And as a side note, I’ve been super craving potato chips lately. I think imma try deep frying radishes and see how that turns out…

And the Insurance Woes Continue

I really am fed up with insurance companies.

Yeah, I haven’t been around for a while. Studying has been taking up a lot of my time lately (I say as I look at the open binder of genomics notes that hasn’t been looked at in the past 45 minutes). As a matter of fact, I have to scurry off to a chemistry lab here in 20 minutes. And I should probably fill out this mounting pile of paperwork from two different specialty pharmacies as I begin the transition to the third one in as many months.

I’ve also been without test strips now for about a week.

I called up that medical supply place a while ago for a new shipment. Sweet, I thought that everything was all honkey dorey. The supply company  had checked with my insurance that everything would be covered, and all was set.

Or so I thought.

I got a phone call last week saying that my new insurance company wanted my strips to go through the pharmacy department, so they would be coming separately from my pump supplies since they were two separate entities. Whatevs, my insurance could have saved themselves shipping by leaving everything the way that it was, but don’t care. I got my pump supplies a week ago, but never received my strips. So I finally found the time to call them today (when I should have been studying, but whatevs) and tried to figure out what was up.

I thought that everything had been taken care of this month. Turns out my supplier hadn’t sent my info over to the pharmacy.

Le sigh.

So I called the pump supplier people and they physically walked the scripts and authorisations et all over to the pharmacy, which was nice, and they called me back to let me know that they got everything…

But my insurance won’t allow me more than 100 strips per month without prior authorisation.

When you do the math, that’s 3.33 tests PER DAY (assuming 30 days in a month). That’s 3.33 tests PER DAY for a TYPE 1 DIABETIC on an INSULIN PUMP.

Worst. Joke. EVER.

Two things happened here. First, some jackoff thought it would be a good idea to make an across-the-board recommendation that type 2 diabetics only need to test their blood sugar like 3 times a week, and the second thing is that some jackoff thinks that type 1 diabetes = type 2 diabetes.

For the HUNDRETH TIME folks,

IT. DOESN’T.

For the record, there was a time I was testing my blood sugar over 10 times a day. It’s gone down some, because I simply don’t have the time (I haven’t even had the time to bitch in here about things, and that’s saying a lot). As a matter of fact, this thought train ended up continuing after my lab, because I ran out of time and had to skedaddle (which Chrome isn’t underlining in red, SCORE!).

P.S. My blood sugar crashed on me in the lab. Suddenly and bad. As in, my TA took the time to ask me if I was ok. And it took me another 5 minutes of feeling completely confused to get the hint, wash my hands and exit the lab with a tube of mini M&Ms.

But I digress. Not having test strips sucks. Although to be honest, I would have test strips…if I hadn’t lost my backup monitor yesterday. Yup, I have no idea what happened to it. I tested my blood sugar in the bathroom of the library yesterday and haven’t seen it since.

I guess I could ask at the desk…but that would require talking to people I don’t know. Which is proving to be more and more difficult, I’m finding. But that’s another thing to deal with at another time.

BACK TO MY ORIGINAL STORY….because, attention deficit OOH SHINY!!

I got my last two weeks of blood glucose readings as well as the last 31 days emailed to my endo’s LPN and they got the prior auths rolling for me. Which means I’ll have the rest of the test strips I need in what, two, three weeks?

*sigh* great.

How much will it take for me to be able to make my own medical decisions? What will it take for me to be able to test my blood sugar as many damn times as I want? I know that I’m like the only person on the planet who tests more than 4 times a day, but I’m kind of in school to become a scientist, and there’s no such thing as too much data. Plus, everyone knows that people who check their blood sugar more have better A1c’s.

People with better A1c’s not only live longer, but have less complications. As in, don’t need amputations or organ transplants or crazy expensive shit like that. Hey insurance companies, test strips cost WAY less than antirejection drugs. Just sayin’.


This was like, the most awfully-worded blog post. Ever. This is what happens when you don’t know what your blood sugar is for 36 hours.

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

Life is Exhausting

Especially when you’re a full-time student.

And a mother.

Working a job until way past your bedtime two nights a week.

With two chronic illnesses that are a full-time job to take care of.

And one of them you’re still waiting for your new insurance company to approve the prior authorisation for the meds for.

I bitch about how run down I feel after an immunoglobulin infusion. But now that I’m overdue for another one, I truly realise how much better I was feeling while getting them.

I really wanna curl up in bed.

But I have to be to work in an hour.

I also really want some fucking Hizentra.

But I’m waiting for the bureaucrats at Upper Peninsula Health Plan to give me the OK to get it.

They told me if it was marked urgent  by my doctor, it could be two to three weeks.

That’s cool, I could get a cold that will turn into pneumonia and I’ll leave you with a nasty hospital bill since I will likely have to be medevaced to Marquette. Not to mention the IVIG I will need to get. That shit alone costs a ton.

But hey, you assholes get to determine whether or not it’s ok for me to get medication.

I forgot that I’m only a dollar sign to the health insurance companies.

Sorry it’s short, but I’m running out of spoons.

The end.

The #Dstigma Rebuttal

Had a good giggle at a tweet that appeared in my feed this afternoon:

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People are so ignorant, it pisses me off. So, in my “ugh, you ignoramus”-ness (and I would just like to take this moment to say that Jeremy said that in mockery of these people, he knows better himself), I hereby present to you my response:

10. Yes, carbohydrate intake is related to increased insulin resistance. However, your cousin did not get it because he couldn’t put down the Twinkies, he got it because of a number of causes, including but not limited to genetics, family history and, as research is showing, some funky factors that control protein synthesis.

9. “A touch of diabetes.” ROFLcopter. You don’t have a touch of diabetes, you either have it or you don’t. If a doctor is telling you that you have a “touch” of anything, I highly recommend you find a new one. Their medical license likely came out of a box of Cracker Jacks.

8. If diabetes could be cured, we wouldn’t even be having this conversation. Ass.

7. Yes, there are different types of diabetes, the word in the blank tends to be “bad.” There is no good or bad kind of diabetes, they all suck intense donkey nutsack after it has trekked from Galilee to Judea in 100-degree heat. All types carry risks of complications that all suck, and all types require some kind of combination of medication, dietary control and exercise. All diabetes is bad.

6. Yes, I am still able to do one-handed cartwheels while balancing a Dutch apple pie in the other hand and singing Gangham Style while shaking my ass, but thank you for your concern.

5. Really? My first cousin once removed once got on a ship. It sank and he lost his left arm to a shark and died bleeding in the north Atlantic. He also lost his chance at inheriting an earldom and instead it went to a solicitor from Manchester. Lucky bastard.

4. Funny you mention that, because I can always spot a dumbass because they look like a deformed duck with his tongue sticking out and one eye is bigger than the other.

3. I had polio for a while, but I got rid of it by moving to the moon.

2. I don’t miss eating anything. Because the stuff that I’ve made while on low-carb is a hell of a lot tastier than any of the grain-laden crap I was making before I realised that even while on insulin, my blood sugars were roller-coastering when I was eating whatever I want. As an added bonus, I have gotten myself one hella sexy body as a side effect. I’m too sexy for you.

1. LULZ, in addition to the diabetes, I also have a defunct immune system. Which means breathe your SARS on me and I’m dead. Game. Set. Match.

I really hate ignorant people who sit on their asses in their underwear watching Dr. Oz and suddenly think they’re a medical expert (I feel like I’ve said this somewhere else before…). The fact that Dr. Oz is full of shit aside, it takes years of genuine (PEER REVIEWED) research before you can be considered anything even remotely close to an “expert.” Just because your mother/cousin/estranged ex who is in prison for coercing his state representative to lick a metal post in the dead of winter has diabetes does not mean you have a damn clue what you’re talking about. The conversation we just had, that just proved to me that you make Paris Hilton look like a Nobel Prize-winning medical biologist. Why don’t you go drink some ipecac. Trust me, it will make you smarter.