Because A Zebra Needs Her Zeal

Having a primary immune deficiency can be very isolating.

This was the only thing going through my mind as I infused tonite, laying alone in bed with my laptop in my lap writing a review on a journal article for immunology. “CVID is isolating.” There I was, alone upstairs, snuggled up in my blanket and hooked up to a Freedom 60 pump, missing human interaction of others who were going through it just like me.

Diabetes has the online community, and it’s prominent and in your face. Do a Twitter search for “diabetes” and all sorts of things come up. Do a search for “immune deficiency” and you find links to press releases and anti-Jenny McCarthy tweets. Which are all awesome, don’t get me wrong, but there isn’t that sense of community that people with diabetes has.

Of course, that is just my impression, and likely has more to do with the fact that I’ve got a touch of social anxiety and don’t like to initiate conversation, even online. I follow people on Twitter, but I don’t tweet them, I don’t start up a conversation. It seems to me that people just don’t talk about it, It’s not like diabetes where the information gets plastered all over your info. It’s like a primary immune deficiency is the dark secret everyone hides in their closet with the dusty skeletons.

I completely understand the desire to live a normal life, to continue on and pretend like nothing’s wrong. I get that it’s relatively easy to forget that you have an immunodeficiency, since taking care of it really doesn’t consume every moment of your day. I just wish that there was the same kind of vocal group out there that diabetes has.

I could join an online community, sure. There are plenty of message boards out there, and I know that there are many devoted to primary immune deficiencies. I can’t be the only one online who understands the wooziness after an infusion due to the Benadryl and the welts consisting of pooled immunoglobulin. I know that I’m not the only one online right now with gauze taped to their abdomen. I know I’m not the only one around who knows the importance of hydrating and knows that it is the best way to prevent the Ig migrane. My question is, where are they all?

According to Twisted Sifter, a group of zebras is called a “zeal.” I don’t care what they’re called, but I need to find a zeal. Zebras work best in groups and their camouflage works best when there’s more than one around. So, immunodeficient people of the world, let’s band together. Let’s form ourselves a zeal and become more strong. Zebras live in zeals because they will live longer that way – why wouldn’t the same be true for us?

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.