11 September 2013

I choose to



(Image is a white background with black font, different scripts for different lines, stating:
I choose to be
Magnificent
Youthful
Stunning
Excellent
Loverly
Fabulous
I choose to be
MYSELF)
 


10 September 2013

Invisible Illness Awareness Week 2013: 30 Things

It's Invisible Illness Week this week! I stole this list from here (and you should go read the rest of the blog!)

1. The illness I live with is: Type 1 diabetes, depression, sinusoidal tachycardia, PTSD, symptoms of OCD, chronic pain (currently something that no one wants to deal with)

2. I was diagnosed with it in the year: T1D-2002, depression-2006, sinusoidal tachycardia-2006, everything else is currently undiagnosed because my doctors don't want to deal with it

3. But I had symptoms since: T1D-2002, depression-2000, sinusoidal tachycardia-2004, PTSD-1999, symptoms of OCD-since always, chronic pain-2010

4. The biggest adjustment I’ve had to make is: Learning how to make life doable with each new wrench

5. Most people assume: I'm a lazy, fat person who ate too much sugar as a kid and just needs to try some cinnamon and try harder to be happy

6. The hardest part about mornings are: Finding the motivation to get out from under the covers

7. My favorite medical TV show is: I don't watch medical TV shows

8. A gadget I couldn’t live without is: My meter

9. The hardest part about nights are: Getting my mind to shut off to I can fall asleep

10. Each day I take: 9 (I think? I don't count any more and I'm too comfy to go look) 13 (I went and counted and I forgot about another one I take multiple times a day)npills and buttloads of insulin

11. Regarding alternative treatments I: Refuse to try unless there's multiple studies showing benefit. Why waste my money?

12. If I had to choose between an invisible illness or visible I would choose: To stick with what I know

13. Regarding working and career: I'm looking for work right now. Please hire me. :D

14. People would be surprised to know: I can appear to be extroverted when the circumstances are right

15. The hardest thing to accept about my new reality has been: How many people walked out of my life because of these new realities

16. Something I never thought I could do with my illness that I did was: Kick as much ass as I have

17. The commercials about my illness: Are so stereotypical, sometimes I facepalm

18. Something I really miss doing since I was diagnosed is: Not caring about my health and limits

19. It was really hard to have to give up: Attempting to be perfect at everything

20. A new hobby I have taken up since my diagnosis is: Activism!

21. If I could have one day of feeling normal again I would: Feel really weird, because "normal people" "normal" is just...not going to happen. Ever. It'd be like living in an alien's body for a day.

22. My illness has taught me: My limits

23. Want to know a secret? One thing people say that gets under my skin is: "Can you eat that?" Of course I can...unless you poisoned it. Then you can eat it.

24. But I love it when people: Fight with me against all the hateful ignorance

25. My favorite motto, scripture, quote that gets me through tough times is: You are not alone

26. When someone is diagnosed I’d like to tell them: You are not alone

27. Something that has surprised me about living with an illness is: The more things change, the more they stay the same. Another 5-10 years, waiting for results.

28. The nicest thing someone did for me when I wasn’t feeling well was: Let me rest and help me get what I needed to feel well again.

29. I’m involved with Invisible Illness Week because: Voices of all of us with invisible illnesses need to be heard

30. The fact that you read this list makes me feel: Grateful for you time!

04 September 2013

Low

I can't piece words together, not in any eloquent way, anyway. It's like my brain was suddenly told to move as slowly as frozen molasses in the middle of winter. I try grasping for words, for concepts, but they float away, slipping through my fingers. But for some reason, just about everything is hilarious, until you tell me to shut up. Then my brain completely shuts down.

My skin is clammy, crawling. My body feels like it's encased in a million tons of lead. My very essence, however, feels lighter than air, like if someone just gentle blew on me, I'd float away. I guess that's where the heavy armor comes in, otherwise I might ride away on a gentle breeze.

My heart thuds in my chest like I've been running a marathon. It vibrates my rib cage, trying to leap out.

My hands tremble as if every movement I make could be the decision between life and death. Between the trembling and the clammy hands, I can't open anything. Whoever thought up those safety seals for the liquid glucose drinks obviously never tested these things with people who were low. I mean, I can barely get them open half the time without the help of sharp objects when I'm normal.

My body just wants to slouch and fall over, its weight becoming too much.

The thought of food makes me sick, but I shove it in as fast as I can. It's pure panic. I can't taste anything, but I get the texture. And yes, chalky isn't just a flavor.

Slowly, surely, my body begins to feel real again. I feel myself settling back into my body, my heart slowing, my muscles strengthening, my mind clearing. Words that were no where near on the tip of my tongue are starting to come easily. There's warmth in my hands, which are shaking less than before. I can finally hold a glass of liquid without spilling it everywhere. I can taste what I ate before. Oh god, why did I think that was a wise food combination.

I feel hungover, at least, people tell me this is what a hangover feels like. I feel exhausted, like I ran that marathon my heart thought we were running, but without moving an inch.

My hands, my fingers...it still feels like someone else is moving them, my body not quite my own again. While the words come more easily, while I can communicate more or less what I mean, there is no character to what I say. My clothes are soaked from sweat, my hair also damp.

My body slowly comes to rest at normal, my mind always reaching "normal" last.

Let's not do that again any time soon.

20 August 2013

Going to the doctor

I have an endo appointment this Friday.

This means that diabetes is giving me two middles fingers...all last week and all this week.

"Hey! You know how you've eaten this exact thing, measured out, 5 billion times before? Nothing you do will work this time!"

"Hey! You know how you haven't done anything yet today? SURPRISE GOOD MORNING LOW!!!!!"

"Hey! You know how you just changed your site? Yeah...it's not working any more."

"Hey! You know how much you hate the GGMS beeps in the middle of the night? You're going to hover, right at 190 (my "high" set point) all night long, so it will go off every five minutes, even if you acknowledge the previous alarm!"

"Hey! You know how your other meds haven't caused bg havoc in a few months? Welcome to 400 an hour after taking them!"

"Hey! You know how you've been really good lately about avoiding door handles and not bumping your sites into doors or walls? You are going to be the biggest klutz over the next few weeks."

"Hey! You know how the cat hasn't been trying to steal your pump or CGM in the middle of the night? Yeah...good luck with that. At least the CGM will be beeping incessantly so you can find it."

Diabetes, sometimes you are a bigger asshole than an actual asshole.

05 August 2013

I'm a nerd

I confess: I'm a nerd! I love data! I love piecing stuff together!

Which totally makes me perfect for diabetes. I mean, this is such a data heavy condition.

I'm also an engineer (in training. Yes, that's the technical term for a person with a BS in engineering who passed the FE, an "engineer in training"). I'm also an electrical engineer (who emphasized in power and energy, but this part is irrelevant to this post).

Unsurprisingly, this meant I took a fair amount of math in college. I actually rejoiced when I finished my last math course, but not because I dislike math, but because I hated our math department. I also took a few statistics courses.

What may surprise a lot of people is how much statistics is involved in engineering. And it can be frightening how much hand waving-engineering magic actually goes in to very important things. If you ever are on a plane with my husband, I'm sorry for this exact reason. He will go on and on about how certain planes failed and engines failed and how terrifyingly thin the actual barrier is between you and the outside while you're in the air. Statistically, though, your greatest threat in the air is pilot error. Comforting.

Statistically, I'm know I should be more terrified of lightning striking me than being attacked by a shark. Statistically, I should be more stressed about getting in to a car accident when I'm close to home rather than when I'm driving somewhere new. Statistically, I should be more worried about the things that I'm not as worried about, just like I'm not as nervous driving as I am flying.

But I've already won the statistics lottery, many times. I have type one diabetes. All my siblings have type one diabetes. My body hates me in other weird ways. I've experienced drama and trauma that most people don't.

So, when statistics tells me I should be more worried about x, rather than y, I call it a liar.

And that's the thing about test strip accuracy. Even though it's supposedly guaranteed to be within 20% (and let's be honest, that range is large enough to drive a space shuttle through it) something like 98% of the time, I will worry about that 2%, not because it is common, but because it is disastrous when it happens.

Let's crunch some numbers, here. Let's pretend I check 10 times a day, to make the math easy, and that my 98% SWAG is correct***. The probability that all those numbers are within that 20% range for the day is .98^10, which is about 82%. That's not too bad, but it's still a B-, which is still passing. For a week? That's .98^70 which is about 24%. That is terrible. I'm supposed to make life altering decisions when there's about a 1 in 4 chance that all my tests results will be within a giant range, every week? (And, for those curious, for the year, that's .98^3650, which is pretty much not happening.) How am I supposed to not worry about something like that?

Let's look at that 20% number as well. I'm going to use mg/dL because that's what I'm familiar with. Let's pretend that my range is 80 to 120 and my target is 100 (because who doesn't love a wonderful 100?). So, I'll have my handy dandy correction formula which will look like this:

(BGreading - target)
ISF
 
 
Where ISF (insulin sensitivity factor) is the X when we general write it out like this: 1u:X>target (more diabetes notation! YAY!) For simplification, we'll call my ISF 50 (For example, if I was 150, I'd take 1 unit, using these numbers). Disclaimer: use the formulas and numbers you and your health professionals have decided on. I'm pulling these numbers out of engineering magic air, like the airplane.
 
So, let's look at how much a dose can change based on that 20%. Pull out your pre-algebra! We're looking at slopes (for my math people, derivatives) and math!
 
The slope is 1/ISF = 1/50, while our independent variable is our BG reading.
 
So, let's take a look at some readings:
 
If I'm 100, my meter could show 80 to 120, which would give me a correction range of -0.4 units to +0.4 units, which is technically an infinite error, since I should really be giving myself 0 units.
 
If I'm 150, my meter could show 120 to 180, which would give me a correction range of 0.4 units to 1.6 units, which is a 60% error, since I should be giving myself 1 unit.
 
If I'm 200, my meter could show 160 to 240, which would give me a correction range of 1.2 units to 2.8 units, which is an 40% error, since I should be giving myself 2 units.
 
If I'm 250, my meter could show 200 to 300, which would give me a correction range of 2 units to 4 units, which is a 33% error, since I should be giving myself 3 units.
 
And so on and so forth.
 
Percent error being calculated by (deviation from expected dosage)/expected dosage. So, for example, if I expected to give myself 1 unit, but the result said to give me 1.6 units, that's (1.6-1)/1 =.6 = 60%. For those of you interested, this simplifies down to*:
 
(1.2*RealBGreading - target)  -1
(RealBGreading-target)
 
The percent error does go down as the number increases, but that has to do more with the target value becoming smaller and smaller relative to the actual BG reading. What you will notice that is increasing, besides the BG number, is the range of dosages.
 
Part of this tells me I should really stay as close to my target as possible to minimize the range of dosing errors.
 
But what this tells me more than anything is that we are living with crap standards.
 
And then we add in all the other problems that come with test strips. They are less accurate less often than what the standards are supposed to be.
 
And we are expected to make decisions based on these numbers every hour, every day. Our doctors judge us based on these numbers every time we come in.
 
How are we supposed to feel safe or know how we're actually doing when there is more accuracy and precision put in the GPS on my smartphone**?
 
 
I want more accurate and more precise test strips (and meters), not only to indulge my perfectionist side, but because my life depends on it.
 
 
 
 
 
 
*This is the same as
1 - (0.8*RealBGreading - target)
     (RealBGreading-target)
 
 
** I don't know if there actually is higher precision standards for the GPS on my smart phone, and I'm too tired at this point to look it up, but is sure as hell feels like it. At least I know where I am and know where I'm going with that sucker.


***So, I looked it up. Apparently, it's 95% of the time, not 98%. This means, testing 10 times a day, there's a 59% chance that all the results are within the +/- 20% (or +/- 15 mg/dL for readings lower than 75 mg/dL) for a day, a 2% chance for the week, and and even sadder "this is not going to happen" for the year.


30 July 2013

Diabetes Balancing Act

As a person, I've grown accustomed to multitasking. Emails! Phone! Scheduling! No, kitty! Don't go that way!

As a person with disabilities, I've grown to to be decent at this balancing act. Meds! Need to rest now so I can do more later! Kitty, stop knocking over my medicine!

As a person with diabetes, I've grown to be a multitasker-balancing act-extraordinaire! Insulin! Carbs! KITTY! STOP RIPPING UP THE CARPET! Other meds!

And people who have diabetes should all be certified systems analysts, this thing is so complex. I once tried to make a flow chart of living with diabetes...it was over 10 pages long before I said "screw this, I know what I'm doing, even if no one else does."

But there's another balancing act that we have to deal with: We must balance how serious diabetes is with how normal we can be.

Sure, there's a lot we can do. And I will say out of the things I can't do, only a handful are diabetes related. For example, my beta cells were fired by my immune system, so all the glorious things they made...well, I can't make them any more. But, I also can't hold my breath for 20 minutes straight, or travel faster than the speed of light, or break the laws of thermodynamics (no matter how much my husband might complain about my cold feet...those still obey the laws, sweetie!), or...well, you get the idea.

Sure, there are times when I feel like all of this just gets in the way and finds ways to mess everything up (like normal sleep, since I don't remember what that's like), but most of the time I don't feel like diabetes is a big giant monster that's out to get me. I think it's a sneaky asshole, but not a giant monster.

But on the other hand, diabetes does kill. I'm sure you've at least heard of IDF's new video that tries to get that point across. Honestly, I feel like a big dark cloud that kills you is depression. Diabetes would be more like a ninja who trips you and then, every so often, murders someone with a lancet. Also, I might have missed it, but are there any people in that video that aren't white?

I digress. Diabetes kills people. Our beloved ADA reports it. And we know the increased risks for complications and other super awesome health problems. And even when it doesn't kill you, it makes you feel miserable. Low hangover, anyone?

And we've worked really hard to get away from the "PWD can't do <insert something ridiculous that people think PWD can't do>!" nonsense. We're able to retort that Steel Magnolias is, in fact, not a documentary. We have professional athletes and celebrities and a lot of really awesome people out there punching all the stereotypes in the face.

But we have this responsibility, one that we never asked for, to keep this balancing act going for those who will never get it; we have to show we're "sick", but not "too sick"; capable, but with limitations; thriving, with death looming around every corner, holding a lancet.

26 July 2013

Depression: Realizing when something is wrong

Content Note: This post contains discussion of depression, child abuse, and death.

This past week's DSMA topic was diabetes and mental health.

This is a hard topic for many.

This is a hard topic for me.

I've had depression for a long time, for many years before I was diagnosed, although, looking back, I would say I've had depression since 6th-7th grade. For reference, other people didn't realize something was wrong until the end of 9th grade. I didn't realize something was wrong until 11th grade. I didn't get the real help I needed until the following summer.

Looking back, I can pinpoint the first time I realized something was horribly wrong, although for other reasons, I didn't do anything about it until much later.

I was sitting in health class, a junior in high school. Boring class, full of busy work, with a teacher who could barely muster to say "penis" and "uterus" when it came time for the giggly sex education part of the class.

But this section of the class was different. We were talking about child abuse and how to recognize it and common misconceptions about child abuse. To illustrate the points, we each had to read a news article.

I don't remember the names or many of the "important factual details" from the story. I remember that a young boy suffered his whole life at the hands of both his parents. I remember that they eventually killed him, shoved him in a refrigerator, and left the fridge, abandoned by the side of a dirt road.

I remember reading this story and feeling nothing. There was no shock, no sorrow, no sickness in my stomach. I remember looking at my other classmates, most of whom I had joked with earlier about a teacher teaching sex ed who couldn't even name body parts without coughing or mumbling, and they were in tears or trying not to puke.

Over the years, I had learned to fake my emotions, so no one would really know how bad I was. I instantly told myself I had to cry. I had to cry and make myself look sick to my stomach. I had to fit in with the rest of the class.

And while I was making myself shed a tear, I remember thinking how messed up this was.

I'm making myself cry over a story about child abuse and a death.

Yeah, but everyone dies. I'm going to die eventually, and other people will have to make themselves cry over my death.

But this is a child. An innocent child.

Life sucks.

Why does it have to suck? Why do people have to be assholes?

Because that's how the world works.

And I realized how numb I had made myself. I was so numb, I couldn't even be truly saddened by evil people doing evil things.

And that, for a moment, terrified me. It terrified me how far gone I was.

But I quickly swallowed the terror, allowed a tear to hit my copy of the story, and told myself being numb was the only way to survive.



Many years later, with emotion, reading other people's struggles with depression, like Allie at Hyperbole and a Half, or Jenny Lawson (AKA The Bloggess) (On a side note, if you have not read Let's Pretend This Never Happened, go read it. Right now. I have never laughed harder. Never.), reminds me that I'm not alone in the fight. Depression is a dirty, sneaky asshole. It cheats. It deceives. It is a liar.

If depression has you, know that you are not alone, even though it feels like it. Allie has been there. Jenny has been there. I have been there. And while we might not be able to give you the medical help, we can be there for you. We can be moral support, without the shame, without the stigma.