Monday, December 15, 2008

5. A Letter to Caregivers

We are often stressed.
Grouchy.
Angry.
Hormonal.
Depressed.

We have ups and downs, we get frustrated. We feel misunderstood and pushed to the limits of sanity.
It shows in our bodies, our diaries, our ability to sleep, and our road rage.

But nowhere does it show as greatly as on our caregivers.
Unfortunately it is the ones that love us the most who suffer as much as we do from this condition that ails us. I think everyone can agree that Diabetes has just as strong (or more) an effect on our minds as our bodies, and I think it is often overlooked how much damage can be done to those around us as well. Stress and worry comes with the package. Most type 1 diabetics were diagnosed as small children (though from what I understand, that is starting to change). Parents and loved ones shoulder the hurt and confusion for us, as we slowly grow up learning and adapting to this lifestyle.

My mum is a natural worrier. I was raised with her waiting up for me at night when I went out. With her giving me advise from Oprah and Dateline... the TV programs informing us on how many predators there are out there preying on us. I look both ways and never leave my drink unattended.

I was diagnosed as an adult. But my mother still worries. And so do the others around me who care for me. Who help me when I am sick. Who looked after me for years when I did not look after myself. We resent their intrusiveness and get exasperated with their worry. They in turn, do not understand our frustration or why this disease is difficult. To many, it should be as simple as checking, eating, injecting.

We know, don't we? That it is so much more than that.
I suppose this is my message to you caregivers.

We often need time. I did. I needed time to realize that I didn't want to live that way... with high blood sugars. I didn't want to live sickly. I had so much more to achieve in life than that sick condition would allow. I needed time to realize that my rebellion towards all who questioned me about my food choices and my blood sugar and my insulin, was hurting myself and them... for what? What?

To pretend I was independent.

Dear caregiver, be patient. Be gentle. But always, always be persistent. Scaring with stories of consequences is pointless I will tell you. Yelling or lecturing with: "Fine! Go ahead and lose your feet!" and such is counterproductive. You don't want them to give up! Or feel that there is no point to trying! Being inspiring, and supportive is your most difficult quest. I think most people live and thrive against all odds, we can too! But not without help. Your help.

This little letter was inspired by my caregivers who not only faced my opposition and rebellion on a daily basis, but also my wrath, and my depression. My mother wanted me to let every caregiver out there know what is necessary. That we need time to come to terms with this ourselves, and hope that our bodies can withstand our self inflicted pain long enough to let our minds catch up with acceptance.

Here's to you.

ttyl!

Wednesday, December 3, 2008

4. What's the Skinny?

I used to be overweight. I had a lovely pear-shaped body inherited directly from my mum. Good child-bearing hips. A healthy figure. God I can't tell you how us women hate that term. It suggests "large" in our poor, advertising-adulterated minds (think a "healthy appetite" or a "healthy size" of anything). I admit my girl friends and I speak often about calorie-counts, diets, muffin tops (you know what I mean right? When the excess skin or fat pushes out a bit above the waist of your jeans?), bloating, and the way clothes fit. Diabetes took care of my weight "issues". Before I even realized it I had shrunk down to practically a wisp. Not only did I not have any fat anymore, I had no muscle either. My years of uncontrolled sugars kept me abnormally thin. I got used to seeing myself that way.

Women put themselves and each other under extreme pressure and scrutiny. I think my perception of normal became very warped. Have you ever seen an episode of "America's Next Top Model"? I had somehow decided that the sharp angles of those bodies were what I should be. A lot of it was subconscious. There is a line in the movie: "The Devil Wears Prada" that goes like this:
Andy: So none of the girls here eat anything?
Nigel: Not since two became the new four and zero became the new two
Andy: Well, I’m a six…
Nigel: Which is the new fourteen.

It's funny right? It's also becoming true. Take for example the Jennifer Love Hewitt fiasco. I don't know if you heard about this, but the gist was that some "unflattering" photos were taken of her in her bathing suit at the beach. She did not look like a runway model. She looked.... well, in my opinion she looked great. She was smiling. She was laughing. Playing in the water. I know this has been said already, but why couldn't she be admired for being happy? Admired for having a good time with her partner? I was envious of her apparent happiness in a good-for-you-I wish-it-was-me kind of way. Then the atrocious gossip began. It was shameful. Nobody is perfect... It is an impossible and impossibly childish cycle. We ridicule those in the public eye who are not perfect in our high opinions. AND we ridicule those who are. Because of jealousy, insecurity, and who knows what else.

The two most common and well known eating disorders are anorexia and bulimia. I have been witness to both and they damage the heart as well as the body. Those who succumb to these awful disorders live in a constant state of anxiety and failure. They feel as though they are failing themselves when they eat, and they are failing others if they don't. It is hard to imagine for anyone, as each case is different and differently difficult. It seems now though that a new and even more deadly strain of eating disorder has emerged. Primarily in young women with diabetes. Skimping or skipping insulin doses to avoid the potential weight gain they may bring after eating is becoming more and more prevalent. It is easy to see why. I myself would be lying if I said I had never done this in the past.

It can seem like an easy solution to eating what you want and maintaining or achieving a slim figure. Unlike anorexia, which depends on deprivation, which is nearly impossible, and saving yourself from the uncomfortable feeling of purging your stomach after a large meal, skipping insulin could seem like a good idea. Please hear me when I say that it is not.

In the world of Diabetes, we already have a slight obsession with food. We are already carb counters. We already know the calories and fiber and fat intake of everything. We already plan our meals and think about the sugars and count count count. All the fabulous early behavior of the two biggest eating disorders out there. Where do we stop? Where do we draw that line that divides us from obsessive compulsive behavior that takes us into the realm of "disorder" and makes this all UNhealthy in our strives to be healthiER?

It's vague. Dietitians, nutritionists, our GP, everyone.... will say "Hey you can do this, it can be simple and here is how..." But the ugly truth is that it often is not simple, and not everyone succeeds in managing it. I know, the idea of maintaining a certain figure or number on the scale is hypnotizing. Ahhh... but so is food... right? I love food. In fact I would put myself in the category of an emotional eater. Most people think of emotional eaters as those who are depressed and "eat their feelings". That's not really what it is. It's eating for any emotion. Yes, I want chocolate when I'm sad. But I also want it when I'm happy. When I want to celebrate....well, anything. When I miss my friends. When I am bored. When I am so frustrated. When I am comfortable and content. In fact the only emotional state I can think of that may not warrant celebratory OR conciliatory eating must be when I am distracted. And that's not really because I do not want to eat, it's just because I haven't thought of it. I guess that's what leads to my own weight gain.

Even this morning, The Scale and I had a pretty extreme argument.

We argue a lot actually.

That's usually when I am tempted to skip my morning insulin. Just to fit in to my skinny jeans a bit better (with less muffin-top haha). Then I have to mentally slap myself. I have a little mantra and tell myself severely: "Enough is enough, Angela." I don't like to use scare tactics on myself. I don't like to think of outrageous diabetic complications that are really not that outrageous at all but rather very real. Scaring myself generally would not be productive, and could lead to panicking myself unnecessarily. But sometimes that little nudge of "what if..?" is just what I need. What if something awful happens because I don't take my insulin this time in an effort not to gain an extra pound? You probably read my infection story.... not all diabetic complications are far away. Some of them can be immediate. Ick.

And so what is a food-loving-diabetic to do to stay healthily slim? I admit I am generally a lazy person when it comes to exercise. So let me rephrase: what is a lazy-food-loving-diabetic to do?
I had to grudgingly admit to my remaining option: The Gym. (If I thought my arguments with The Scale were bad....)

So I joined The Gym. I have decided The Gym is a male entity. He woo-ed me with gifts (a free gym bag and healthy living self-help book). He boasted a good time and fun activities (Yoga and martial arts-style classes), but I fear once the honey-moon phase is over that this relationship may become tedious. I am determined however. I will make this relationship work.... like with a man (or woman, depending on who you are): a little give-and-take, a little work, and a little self sacrifice and I will get what I want out of it.

I went the first time last night in fact. I swallowed my self-consciousness, put on my sweats and jumped on a bike. I set the controls for First Level, Random setting, 15 minutes. Easy right? I mean, I used to ride my bike all over in the summer. This couldn't be much different. HA!

1.45 minutes into my "workout" and I thought I would die. What was I thinking?

Have you seen Bridget Jones’ Diary? The scene when she's on the stationary bike and is going so hard she pretty much falls off? Yea that was me after 10 minutes. Suddenly that movie seemed a lot less funny.

I kept going though. I have a friend who is a personal trainer. She suggested going slow at first. Like 30 minutes a few times a week for cardio exercise and maybe one yoga class. I managed the 30 minute workout I am proud to say. Stepping off the treadmill at the end was like stepping out of a space shuttle after a moon landing. My legs didn't seem to know how to work right on solid ground. I must have looked ridiculous. 30 minutes may not seem like a lot, but for me... someone who has been very sedentary for so long because of my uncontrolled diabetes, it was a miracle. I literally bounced out of there at the end (even despite my moon-landing legs).

I am still not used to the size of my body now. I am not overweight by any means. I just got used to being a size 3, I got used to looking bony. I got used to having no energy, having to psyche myself up for climbing the front stairs to the house because the first stair was a bit bigger than the normal size (seriously... if I had a bag of groceries or something I would put it down to haul myself up by the railings because I couldn't walk up the three stupid stairs with my leg power alone. How sad is that?) Some of my favorite clothes don't fit anymore and that's annoying.

But I can now do something that I haven't been able to do in years: I can run in the park with my dog. It's exhilarating. I'd forgotten just how good that feels.

Oscar, the man in my life, my little min-dachshund, he's pretty thrilled too.

ttyl!
sugar.free.Ang

3. The Screaming Hyena


I think one of the toughest things I went through (and continually go through) is the incomprehension of the complexities of my condition from those around me. It's an isolated feeling. Sometimes very lonely. I always knew there were many other young people going through the same things, but finding them, speaking to them...was near impossible. I suppose that is why I wanted to be involved in this project. Since I wish there had been something like this to turn to when I was diagnosed, when I was really struggling. Just knowing that other people are dealing with this as well might have helped me.

I have mentioned before, I refused to take care of myself for the first few years. This naturally led to some ridiculous complications. The worst of which were by far the infections:

I guess it started off as a small pain in my rear end. Sitting at work suddenly became uncomfortable, then painful, and finally unbearable. I had no idea what was wrong... it was not an area of the body that is easily visibly accessible. As you might guess, getting someone else to check it out for me was out of the question. So I endured as long as possible (looking back, that maybe wasn't the smartest move. Early detection is the best thing possible in these cases). Finally I couldn't take it anymore and went to the doctor.

I thought at the time, as a 21 year old young woman, that lying on my side on an examination table dressed in a gown made out of paper, and squeezing my eyes shut as my doctor poked around that sensitive area with clinically cold hands, that that had to be the worst experience I could possibly have to endure.

Whoo-boy.

Fast forward 6 hours, to me at the hospital in another fancy paper gown, being poked by multiple clinically-cold hands. My hospital of choice (and the best in the city, in my sort-of-expert opinion) just happens to be a training hospital. So instead of enduring one stranger peeking near my privates, I was lucky to have my very own TEAM! A whole team of interns, and I get to help facilitate their learning experience.

Fantastic.

I rethought my first judgment of "the worst experience I could possibly have to endure"

It turned out I had an abscess. A pocket of infection under the skin. It needed "emergency surgery" I had to wait about 36 more hours for a free operating room. Until then they continued to check up on me. There's nothing quite like having to drop your pants every 20 minutes or so for the next group of strangers to have a "look-see".

It's a humbling experience.

The surgery was the easy part. What I had not realized, and was horrified to discover, was that in cases such as this, the wound needs to be packed with gauze so that it does not just refill with infection (this is a little gross I know...). This packing needs to be taken out and re-packed with clean gauze so that the wound heals from the inside out.

Can you imagine the effect this has on a raw wound? For any out there who have been through this, you have my deepest condolences.

Two days after the surgery they decide is when they are going to change the packing. About 20 members of my team cram themselves into my hospital room. The feeling radiating from them is ominous. Ominous and curious. One of the lucky ones gets to do the procedure herself.

I should tell you now that I'm a suck for pain. A total wimp.

I'm watching them prepare some equipment to do this and I'm sweating through my gown. Sweating through my bed sheets, I see my intern and my nurse pull out a long toothpick-looking thing they would be using to stuff the clean gauze back into me after removing the old gauze and come to the (correct) conclusion that this is not going to be good.

I reluctantly role onto my side and reason with myself that they at least have to remove the old gauze, I mean, they can't leave that stuff in there forever, right? About 3 seconds later I decide that I was wrong. And that I could completely be fine with just leaving the gauze in my bum for the rest of my life!

The intern had given the gauze one hard tug, ripping out the first section of it dry. Yes... dry. Apparently they had stuffed yards of it in there.... this was only the beginning! I refused to let her do any more. Beyond all rational thought I started yelling that she needed to knock it off, because I wasn't going to let her touch me again. I think they tried to reason with me, saying that she wouldn't pull anymore without telling me first, but that they thought saturating the gauze with saline solution would help it slide out more smoothly. My nurse was busy pumping painkillers and sleep aides into my IV, but I barely noticed her.

I rolled over again to let them pour the saline, confident they would tell me before pulling again.

Not so!

Suddenly yanking the remaining string of gauze she pulled. And pulled. And pulled.

I had a friend waiting out in the hall. She described the noise that came from my room as a screaming hyena. For the rest of the week in fact, nurses would come in and tell me of concerned patients from the other side of the ward who'd heard my wails of distress.

When she yanked that gauze, going back on her promise to tell me beforehand, my rage took over. My pain took over. To my everlasting shame, I swung around and punched her. I punched her in the head actually. Luckily she'd gotten the remainder of the gauze out. It was about then that the sedatives took affect (a little late) and I fell asleep.

I heard later that because of my, um... slightly adverse reaction... they decided to forgo the normally obligatory re-packing of the incision. Therefore I was very lucky that I did not have any re infection. I healed well and aside from not being able to sit properly for awhile (my mum offered to buy me one of those inflatable seat doughnuts but I couldn't bare the embarrassment of that) life went on.

Over these years that I have lived with this disease, I've found that through their concern, medical professionals inadvertently resort to scare tactics to encourage straying diabetics to get their acts together and take care of themselves.

That is not what this is.

While I realize it could be a potentially scary story to some, what I intended it to be was just an experience of mine. Something I wanted to share, as it contributed to me. It showed me about myself. It is an attempt to sympathize with any who perhaps have also had the same misfortune.

ttyl!
sugar.free.Ang

2. Diabetes Police


I went to a diabetes convention a couple of years ago. It was a huge event. Lots of guest speakers and booths. One of the speakers spoke about the Diabetes Police. Have you heard this term before?

I had an allergy test done once. I found out I was allergic to eggs. I don’t think I have ever craved an egg sandwich more than when I left the doctor’s office that day.

I think it’s human nature to want things that we cannot have. When I first got braces I suddenly wanted to chew bubble gum all the time. Why? I have never been a gum chewer in my whole life!

Do you have a well-meaning-always-has-your-best-interests-at-heart family member or close friend? You know the one: every time you take a bite you get the obligatory “should you be eating that?” The person who sneakily steals your M & M’s from your purse and replaces them with a No Sugar Added granola bar? You open your email to find 101 forwards with titles like: “FUNtastic diabetic recipes”.

For me it’s my mum.
I used to find it intensely frustrating. It made me want to rebel.
Chocolate cake! Gummy bears! Ice cream!
I’m sorry…. I CAN'T eat that?? Just watch me!
I fought against her. I had to! I couldn’t keep my sanity any other way.
If I had a headache: “Have you checked your sugar?”
If I felt ill: “What’s your blood sugars??”
If I was grouchy: “Are your sugars high? You seem irritable.” ( I can tell you, nothing makes a person irritable quicker than being called irritable. I get irritated just thinking about it actually…)

I not only fought against her…. I made myself sick fighting. Until I woke up one day and had a striking thought: “What is wrong with me?” My poor mum was worrying herself sick about me, all for this false, ridiculous, pride I had. I mean hey, if she loves me enough to put up with my stupid rebellion and still worry, and still warn me… maybe I should chill out a bit.

So I did. And I listened to her.

Not that I don’t still get irritated. Because I do (“no mom, I don’t think my hangnail has to do with my blood sugars…”) but I love her for it. Who else is going to watch my back?


ttyl
sugar.free.Ang

1. Denial

According to my friends: needles are scary. Terrifying, in fact. Just pulling out my insulin pen can send some of them running. Not to me. Needles are no big deal. They weren’t even in my pre-diabetes days. My fear is much worse. Much more frightening: my meter. I have been known to make up any excuse possible to avoid checking my blood sugar. I didn’t want to know what that number was going to be. It’s like playing hide-and-seek with a little kid. You know, when they just close their eyes convinced that if they can’t see you, you must not be able to see them?

And so it was with me, playing an eternal game of hide and seek with my little glucose monitor. If I don’t see that my sugar is high, it must not be….right? Right?
I know what you’re thinking: DENIAL.
You’re right.
Hello step number two of the grieving process!

I think I skipped step number one: Shock, and went straight to Denial. The next steps were Anger and Guilt. Anger sped by (it’s hard to be angry with no one to blame) then guilt. Ohhh, every diabetic must experience the guilt. But somehow I always fell back on denial. Maybe it comes from having been diagnosed at age 20, having lived so many years without it, how could I have diabetes now?!
So I decide that I don’t. I stop checking, and the inevitable always happens… I get sick, I lose weight, I scare everyone.
I don’t even notice, but apparently my personality changes too.

“It’s so funny how everyone argues with me about everything when my sugars are high.”
What? I’m the one who’s irrational? ME? Never!

They say that the only way to conquer your fear is to face it head on. Like if you’re afraid of drowning you go in the pool and hang out in the shallow end, slowly getting deeper as your fear subsides. If you’re afraid of spiders you… I don’t know… make friends with a spider?
So I check my sugar: 22.2. Damn.
Take insulin in a blind panic.
Check sugar: 16.5 More insulin! Hyperventilate! Where’s my brown paper bag?!?
Check sugar: 10.2 Hey that’s not so bad.
Check sugar: 7.9 Safe zone. Suddenly I have no fear. The world is my oyster!
I can do anything! I love everybody! Why was I so afraid? Diabetes is a breeze!
Check sugar: 17.8 WHAT? Hyperventilate! Hyperventilate! Insulin! Insulin!
Check sugar: 8.0
Whew.

A typical day of me trying to lower my sugars, and overcome my fear. I like to think I’ve come to Acceptance. I check my sugars (still with hesitation) regularly and try to keep my panic to a minimum. I know my weakness. Sometimes it feels like that little machine has too much power, doesn’t it? But it also gives us power, to take control, to live better.

I’m also afraid of sharks.

ttyl!
sugar.free.Ang