15 November 2012
31 October 2012
It’s not easy constantly monitoring spoons and dealing with regular life on top of it all. I go through taking care of myself burn out. I go through not liking myself at all. I go through thinking about life and death. I go through thinking about being a parent in the future. I go through explaining everything for the millionth time burn out. I go through a lot of crap.
Not to throw a pity party for myself, but it’s not exactly easy over here.
And I need help.
It’s hard asking for help, though. Most people just don’t get it. “It can’t be that hard.” “It’s just a few extra things.”
And yes, it is just a few extra things, but those things look like mountains, especially when depression is added in to the mix, especially when self-doubt is added in to the mix, especially when other medical conditions are added to the mix. And then everything seems like an impossible task and it’s just easier to give up, hide under a blanket, and pretend that the problems aren’t there.
I’ve tried lots of things to help me overcome diabetes burn out, and I think the problem, for me, has always been that the solution is to go from zero management to 100% management instantly. That’s not going to happen, and that’s setting myself up for failure.
I have to start small, and work my way back up. One thing at a time. One foot in front of the other. Step. Step. Step.
Sometimes I slip and fall back in to old habits. Sometimes I go back under the blanket. Sometimes I just have to ignore the world and all the problems. But sometimes I need someone to just tell me that it’s okay to mess up, that it’ll be okay, that I’m not terrible for going back.
30 August 2012
Let me start off by saying that I am glad that there are still people with disabilities who have the privilege to have not experienced the ableist shaming that is "disabled inspirational stories."
Let me further say that there is nothing wrong with finding a person's story inspirational. Many people have done amazing things and I think the effort and results should be cause for celebration.
Here's the problem, though. The way some people (okay, most people) on the planet phrase these stories makes a world of difference.
Let's take a hypothetical awesome person. We'll call this person Joe, to save me some keystrokes.
Joe has done some awesome things, like climbing mountains and getting a masters degree. Joe is working on his doctorate, and he discovers some field changing information while doing his research. For the sake of hyperbole, let's say Joe discovers the cure for colon cancer.
Joe is a pretty awesome dude, right? I mean, he's smart, he's athletic...
Now let's pretend that Joe lost his left leg in a car crash when he was 10 years old.
Did your perception of Joe change? How? Do you see him as someone to be pitied? Do you feel that Joe needs to be protected more? Do you feel that Joe might not deserve all the credit for his accomplishments? Do you feel that Joe might have gotten special treatment? Do you think that Joe lives a miserable life? What do you now feel about Joe?
And how do you think the world is going to phrase this story?
I am willing to bet that every major news organization--CNN, Fox, NBC, ABC, CBS, AP, etc.--will report it as a "disabled person" who did something miraculous.
Forget all of Joe's accomplishments. Forget that he's smart. Forget that he's athletic. The news item will be that Joe is disabled and he did something.
And the news organizations won't interview him as much as they would his friends and family. "What was it like when Joe lost his leg?" "How did you deal with such a loss as a parent?" "What's it like having a disabled friend who is so inspiring?"
Does anyone see the problem?
Joe found a cure for a terrible disease. Joe made this discovery--not his parents, not his friends. Joe did something amazing because he is an amazing person, not because he is disabled. It doesn't mean jack that he lost a leg in this context.
So when people write about Joe and title it with things like "Cripple discovers cure" or post things on their facebook with comments like "F legs!", these people are missing the point. Entirely.
And you know what, you're probably making every other single person with a disability feel like crap.
"But it's not my intent to miss the point or make other people feel terrible! I am inspired that someone like Joe could overcome obstacles and do something amazing!"
What is the point, exactly? That a human being, yes a human, just like you, did something amazing. That amazing thing is inspirational. That human being didn't do it in spite of a disability. They didn't miraculously gain super powers by being a person with disability (by the way, screw you comics and super hero tropes). The point is that if you feel so inclined to be inspired, it should be because people are amazing and do amazing things, not because of something you see as an inferior quality that they happened to "overcome".
And you know what? Intent is not magic. It's not unicorn farts. It's not rainbows or candy. And it's not the point.
It doesn't matter if you didn't intend to objectify Joe. It doesn't matter if you didn't intend to upset people with disabilities. The fact of the matter is that you did.
The fact of the matter is people like me, and myself, get bombarded with this crap. All. The. Time. Sometimes we're the object being propped up, and that is incredibly awkward. Sometimes we're the ones being sent the news articles.
I don't want to be propped up for something because I am a person with disabilities. I want to be acknowledged for my accomplishments because the accomplishments are amazing, not how I accomplished them or what I had to overcome.
So what's the appropriate response if you're called out because your privilege is showing? Stop. Take a deep breath. Listen to what we are saying. Just because it hasn't happened to you, just because you don't see it, doesn't mean it doesn't happen and doesn't mean that we are wrong. It just means that we have experienced this crap, and we're trying to ask you to knock it off.
15 August 2012
So, here's the situation. There's this dream job, filled with unicorns and cupcakes and glitter-perfect for any member of the DOC.
You sit down for the interview, and it's totally going awesome. You're witty and charming, and you pretty much have this job in the bag. Until...
That's right. They ask you a question that would make a unicorn poop rotten cupcakes.
"So, how are those beta cells? Are they good workers?"*
Noooooo!!! Pancreas! Don't answer! Let the brain answer! It'll pull this off! It can do it!
Truth be told, my pancreas is a delinquent, and it's taking all my other organs with it (or at least it's trying). It hasn't shown up for "real work" in 10 years. I think it's gone on vacation to Hawaii or the Bahamas. It could have at least called, maybe sent a postcard or a few trinkets.
The beta cells died in what I hope was a glorious battle. I hope there was an epic death scene ("Don't die on me Johnson! Don't you dare!"), a glorious romance ("Roger, my love!"), and some wicked weapons. I mean, that's half the awesome of any battle movie, right? "Oh! Look at that gun!" "Oh! That cannon is so awesome!"
But in the end, the immune system massacred those poor beta cells. That ruthless immune system brought the firepower equivalent of a nuke to a sad little group of cells that had the equivalent of a pitch fork.
Well, I hope the immune system is happy. I mean...wait...
What was the question?
*I know this question could never be asked in a real job interview, and I'm not entirely sure how anyone would ask without sounding like the most awkward person in the world, minus your doctor.
30 May 2012
I wish my insurance company paid for _________because ______________.I'll be honest, I've been putting off writing this because I've had to think about it all month.
Strangely, a lot has happened this month. I've pretty much single handedly met our deductible, which feels kinda cool, but mostly depressing. I think the only thing that wasn't me was my husband's GP check up at the beginning of the year (like ~$100).
And we're no closer to figuring out what's wrong with me! I have conflicting test results and no one knows which test is right and the fact that, you know, my life kinda hangs in the balance isn't helping my stress level.
I've been testing more, which means that I'm using more test strips, which insurance fortunately covers at 100%.
I haven't been as active (hooray depression and other problems that make activity extremely difficult!), so my insulin needs have gone up (and granted, I didn't eat a whole lot my last semester at school, what with depression, my husband being a three hour drive away, and no one to nag me to eat, so eating regular meals means insulin needs go up too). Fortunately insurance covers my Humalog to quite an extent.
I've started on Symlin, which is helping (I think? I'm still toying with it), and insurance covers that a great deal too.
I'm getting my second set of pump supplies for Navi (my pump) on this insurance, and so far...well, insurance is covering it. I need to have a conversation about switching to a three month (instead of a one month) supply and getting 5 boxes of sets and cartridges (instead of one of each) for those three months because I'm a klutz. And kitty. But that is besides the point! Insurance pays for this stuff.
The heart meds I am currently on, while they aren't working as well as they used to (episodes are back and in full force, though no where near as bad as without the meds or before I went on them 6 years ago), are doing the job for now, and insurance covers quite a bit of them.
My insurance covers quite a bit of my B.C. and happy pills too.
They cover some of the doctor visits, labs, and tests, and now that we've paid the deductible, they'll pay for much more.
But I know I'm lucky. I know I'm extremely fortunate that my husband has a job where they offer great insurance like this and that his job allows us the finances to have the insurance. I know that many people do not have access to this kind of insurance, and it makes me sad. And angry. And depressed. And sick.
I read about people having to make choices--medicine or food or housing. I hear about people waiting to go in to the doctor, because they can't afford a visit, and they put it off until the situation becomes dire.
I feel guilty that I don't have to make those choices. It crushes me to know that there are people that do have to make those choices. It's infuriating to know that while other systems aren't perfect, at least everyone can theoretically get something.
So what do I wish insurance covered?
I wish every insurance company covered everyone for everything because shit happens and no one should have to make those types of choices.
21 May 2012
In fact, this hero is my best friend, and has helped me through so much over the years. This person has been one of my main motivators in getting my health under control. When I start crying in my sleep, this person comforts me. When I'm being cranky with a high bg, this person tolerates my less than stellar behavior. When I'm having a low, this person will fetch me juice or some other substance to help bring me up. When my heart is freaking out, this person pulls me close, letting me know it's going to be okay.
He can make me laugh and smile, even when I don't think it's possible. We laugh together. We learn together. And we're on this journey of life together.
My hero (diabetes, health, and all) is my husband. Thank you for sticking with me, for being with me, for helping me, for loving me.
19 May 2012
Note: This is not my typical morning, I just thought I'd share what my rebounds look like.
Photo: Tigerlily the kitten helping me snap a pic of my makeshift nighttime sharps container and a bottle of Diet Mt. Dew. She's such a helpful kitty, like when she flops on top of the bottle of glucose tabs when I'm 44. So helpful!
Photo: Diabetes confetti! (Test strips cleaned out from meter case. See, Mom! I'm testing!)
Ampersand Studios )
Video: Tigerlily and her box, because this is what I watch most of the day
Photo: Tigerlily in a Diet 7up box, because kitty in a box!
Photo: Poster that was out up in the hallways in my dorm in college. I left a note. Because they are jerks. They took them down later.
Photo: A black Pomeranian puppy named Momo who was once my shadow, but now she lives with my parents and younger brother. Even though she wasn't trained to be a d-dog, she wakes me and anyone else she can whenever my younger brother or I had a bad blood sugar. This was taken on her third birthday, and I gave her some whipped cream. She'll be 7 in July. Also, we just needed an adorable picture after that last one!
And this some of what my life is like, filled with kitties and family and sometimes poopy headed poop monsters, but then I just snuggle my bestest friend (AKA my husband) or a kitty or a puppy, shoot some zombies, snuggle some more, and then maybe write an angry rant when I'm coherent enough to use words. But mostly I have kitties and snuggles and Nutella.
18 May 2012
But over all of that, I want people to know that people with diabetes can do everything that people without diabetes can do--we just may have to do it differently or at a different pace. Sometimes we may need to take care of cyborg parts; sometimes we need to take care of lows or highs; sometimes we have to deal with crappy people or insurance companies that try our patience. Despite all this, we can lead wonderful, fulfilling lives. We can be inventors or professional athletes or the next president. We can get married and have children. We can have best friends and eat that cupcake too. Diabetes doesn't make living life to the fullest impossible--it just sometimes gives us extra bumps in the road.
17 May 2012
So, I've mentioned that I have depression, right?
I've long wondered if there's something else. I've always been...quirky? I don't if that's the right word.
I am extremely introverted and shy. I'm better than I used to be. My mom can testify. I, apparently, would hold my breath when strangers came up and touched my hair because I had golden ringlets, and then the second they turned around I'd scream at the top of my lungs like I was being shanked.
I've always picked at my skin and pulled out hair in specific areas. I shave specifically so I don't pull out that hair, because ingrown hairs can be painful. I pick at my skin because it just doesn't look like it's formed properly, and it bugs me, to the point that I will ignore pain to "fix it". I know this is completely illogical. Don't judge me.
I've always been one to mull things over for much longer than need be, much to the annoyance of some people. Like, my mom was frustrated that I'd wait two weeks or more to tell her that someone said something stupid at school. I waited years to tell anyone about being abused. Part of it is a trust issue, whether or not someone will use this information against me. Part of it is wondering how this information will affect the person I'm telling and the person's reaction. This is a problem when I get into arguments, because if I don't have time to mull things over to my brain's satisfaction, I end up saying really hurtful things because I want time to think things over and for the person to leave me alone to think, not because I actually want to hurt them.
I have "bizarre" rules for myself. At one point it was walking a specific path in the house before going to bed. I used to listen to music at night to give my brain something else to focus on, and it would generally be one song on repeat the whole night. This is apparently annoying to other people, so I try to not do it. I don't let my nails grow past a certain point (meaning I'll never get a mani-pedi, also because I hate having my feet touched). If I'm playing solitaire, I need to win at least three hands in a row. I don't know if that's me being competitive (my computer isn't a part of Skynet yet) or if that one is truly weird. I eat my food separate most of the time--I don't like food items touching, except in specific instances. Sandwiches are okay, as long as everything is in the right order. And there's this hummus shawarma thing that is delicious and I mix that one up. And I have to eat all of one dish before moving on to the next thing. I can't eat my mashed potatoes until I finish all my turkey. I'm also a classic fidgeter, but this seems more like it has to do with the engineering knack than anything else.
I have a thing with food textures. I cannot eat pudding because the texture is just wrong. I also can't eat apple pie, but apple sauce is OK. I have a thing with sounds...sometimes they're okay, other times I need complete silence. I have a thing with physical contact. Hair in my face is like a war crime. People touching me when I don't see them coming almost always leads to a panic attack.
Speaking of panic attacks, I have them and triggers that make me a useless pile of goo. I can be fine, and then suddenly I'm thinking about every single last thing that can go wrong. Generally if there's a trigger, it leads me into disturbing thought land, which I'll get to in a minute. But if it's just a run of the mill panic attack, I'll have a million thoughts go through my brain at once. It's an information overload, and most of that information is ways that things can go terribly wrong. And it doesn't stop. It just doesn't stop. The thoughts keep coming. The sense of impending doom surrounds me, drowning out all reason and reality. People who try and snap me out of it...well, it goes back to I can't process them because I'm processing doom and gloom, so I panic more because I'm unable to do anything right, which means I'm a bigger screw up, which means I'll fail more, which leads to me sounding like the entire planet is going to explode or something, and I'm the only one who knows and I have to convince everyone. To clarify, I don't hear voices. It's more like if you're trying to remember something and suddenly you remember everything, not just what you're looking for. Does that make sense, or did I just confuse you more?
And I didn't realize this, but most people apparently don't have dreams on a frequent basis where they're murdered in horrific fashions. For example, I don't think most people dream up the what if I died in a mass murder, what if I died because someone was tearing my limbs off, what if I died falling off a cliff, what if I was tortured to death by having bones broken...all in one night. Most people don't have dreams about their past abuse, and dreams of how it might happen again. Most people don't have these thoughts while awake either, which I do. It's like music in the background. Sometimes I can completely tune it out and appear to be a normal human being. Sometimes I start humming along to the melody, and sometimes I'm smothered in every minuscule detail.
So, this is where the internet comes in. I sometimes, for fun, put in all my symptoms into WebMD and see how many times I can get it to tell me to go to the hospital right this instant. After a conversation where a friend pointed out that my brain is "fucked up" (their words, not mine), I figured I'd take this guilty pleasure (which apparently is also a messed up guilty pleasure), and look at the mental health section.
I've had teachers in the past joke that I wouldn't be able to leave my house by the time I'm 20 because OCD will have consumed me, so while I was rifling through the more common mental health issues, I decided to look at the symptoms. I mean, if diabetes is so horribly represented in the media, then why not OCD?
Apparently, "People with OCD are plagued by recurring and distressing thoughts, fears, or images (obsessions) they cannot control. The anxiety (nervousness) produced by these thoughts leads to an urgent need to perform certain rituals or routines (compulsions). The compulsive rituals are performed in an attempt to prevent the obsessive thoughts or make them go away.
Although the ritual may temporarily alleviate anxiety, the person must perform the ritual again when the obsessive thoughts return." (Thank you WebMD).
Also, the anti-depressant I'm on also is used to help with OCD, which might explain why I'm not a total mess.
I don't know. I know it's not an official diagnosis, and I'm probably reading too much into all of this, but writing all this out, yeah...my brain is messed up. Writing all this out makes that very clear.
I love my Freestyle Lite with the zippy butterfly strips, the little landing light, and the super small sample size, since I'm not a bleeder. I wish it was more accurate, though. I would love improved accuracy.
I like my pump. I mean, as I said yesterday, I hate the alarms. Someone at Animas please fix the alarms. I would love being able to have some sort of alarm annoyance scheduler and then an override function. Like, I don't want the stupid "OMG! Your cartridge is empty! You're going to DIE!" alarm when I'm in a meeting or taking a test. I have a replacement ready, I just can't do it at that exact moment. Let me silence the stupid thing for a set amount of time. Like, say, until the meeting or test is over. Let me schedule it to be loud and obnoxious at night so I actually get up and deal with it, but not at the annoyance level it's currently at. Seriously, tone it down like 5 notches. Also, seriously don't make me scroll in the calculated dose. Whoever decided to make me dial in every since stupid bolus needs to be slapped. I know it only takes a few seconds (if I'm paying attention...I often over dial, then under dial, then over dial...), but when my hands are in extreme pain, to the point that holding the pump makes me think of amputating my hands, this is an extreme annoyance.
Other than those two things, I really can't think of anything else I dislike about my pump. I like having the meter remote, especially when I'm wearing a dress or pants with no pockets (seriously, fashion designers, why are pants for females equipped with the most ridiculously impractical pockets?!). I don't use it as a meter, because as I mentioned before, I can't bleed enough for the One Touch test strips, but I like having the option. I like the increments, the calculators, the food database...
I don't mind doing Symlin shots. I mean, it would be totally cool if it could be integrated into my pump, but I don't view it as the end of the world. I like the idea of the pen timer cap thingies that have a timer to tell you how long it's been since you (theoretically) gave yourself an injection, but I'm not sure if they will fit the Symlin pens.
I tried a CGM years ago, when they were first becoming more popular, and it was a miserable experience because it was like the most inaccurate thing for me, but I've been informed that they've fixed many of the problems, and I'm willing to give it another go.
I know that all these things have to be spread out, which means taking up a lot of real estate. The Symlin shots need to be at least 2 in away from insulin injection sites (or something like that...I'd have to look at the insert to get the specific wording and I'm too lazy to look it up or go get it), and the CGM sensor has to be a certain distance away from infusion sites (from my understanding). Maybe if there was like a patch thing...like a cross between the Omni-Pod and the Ortho Evra patch? That would still be a big thing, though. Just to be clear, I'm not talking about giving everyone BC through their pump, but rather just having the layout be something flexible, but you probably already knew that and this is a pointless clarification.
Oh! I would like more connectivity between devices, though. It would be cool if I could get all my cyborg parts to talk to each other, or even just one device that would act like a dispatcher. I already carry enough crap, so that would be nice.
I know we're limited by some of our current technology. The linear actuators for insulin pumps have to be a certain size to ensure accuracy and generate enough force. The insulin cartridges have to be a certain size to make the infusion sites worth while. There is always variability and variance with testing and everything. Stats class, along with my Transmission of Information class, made me realize how much I hate noise and how much of a pain in the butt accuracy is. Speaking of that transmission of info class, receivers, transmitters, and encoders have physical dimensions. There are physical limitations to what can be done.
I would much rather have the current technology perfected and tweaked than roll out the next big thing while ignoring the current problems. I mean, don't get me wrong, I like new gadgets, but I also love accuracy and dependability. The next new toy might as well go in the trash if I can't trust the outputs or trust that it will work on a daily basis.
16 May 2012
I sometimes forget to check before putting that sandwich in my mouth. I don't preblous because I get be really flaky about food. I get very impatient when waiting for the half hour to elapse for the Symlin, and if I've forgotten to check, chances are I didn't take the Symlin for the food either. I'm not the best at SWAG-ing, and weighing out my food seems like a major pain in the butt, so I don't do that very often, unless I'm eating Ben and Jerry's straight from the pint. Mmmm...Ben and Jerry's.
What were we talking about? Oh, yeah, things to work on.
Honestly, all the alarms on my pump make me want to take a hammer to it. I am very absent minded and easily absorbed into other things. So, doing my post meal check, well, doesn't really happen very often. My endo wants me to check a half hour after I bolus for my food. That's nice. For breakfast, I generally plop my butt down and watch the news while eating, and then get distracted by how much I want to reach into the tv and slap some people. It doesn't help that it's election season here in the US. That leads to some major distraction...so that half hour, and then the two hour mark, pass on by. I check before lunch (when I remember and I'm not going OMG lunch!), and lately I'm catching up on blogs, or reading while eating...so that half hour mark and then the two hour mark pass by again. My S.O. and I talk over dinner...so those marks pass again. Bed time and I have my traditional night time glass of apple juice, not because I'm afraid of going low, but it's my night time snack. And by then I'm like "screw post meal checks, I haven't done them all day and I don't wanna stay up."
I have tried to do the "check bg after x amount of time after a bolus" alarms on my pump, and I turn the alarms off without checking, because I will do anything to silence the noise other than do what it asks, because I hate the alarms on my Ping so much. I genuinely loathe the alarms. I want to find who programmed the alarms and smack them. They go over the "reminder" threshold and go into the "Navi from the Ocarina of Time" realm of annoyance. You ignore the alarm, don't even check what the stupid thing says, and go straight to muting, and then you're completely baffled when stuff goes wrong.
I need to do post meal/snack checks, and I want to. Does anyone have any tips or tricks? Or should I just sit bored for two hours after each meal? Egg timers? Some elaborate rube goldberg machine?
Help me, D.O.C. You're my only hope.
Edit: if something doesn't make sense, the kitten tried to help me type this, so please point it out so I can fix it. Super helpful kitten powers!
15 May 2012
This is hard, especially since I'm still recovering from d-burnout, years later. It's easy to think I'm still doing a terrible job, even though I've lately been discovering that (surprise!) it's not all my fault. I mean, the lack of testing and bolusing during burnout was totally my fault, and re-establishing those habits isn't easy.
But even though I went for spells of never testing, of bolusing once every so many meals, of doing almost everything d-related wrong...I always managed to change out and wear my pump.
Ever since I had it, I've always kept it with me, connected, letting my basal flow. I've always changed out, and only on a few occasions have I not had insulin in the cartridge (the number of instances would be three...maybe four in ten years).
Honestly, it feels so weird congratulating myself. I'm much better at self deprecation.
14 May 2012
However, these are the dblogs that I keep up with:
Bitter-Sweet @ http://www.bittersweetdiabetes.com/ (This one should be obvious!)
Diaturgy @ http://diaturgy.blogspot.com/
Sugar Rollercoaster @ http://sugarrollercoaster.blogspot.com/
The Angry Type 2 Diabetic @ http://theangrytype2diabetic.blogspot.com/
Ninjabetic: The B.A.D. Blog @ http://www.ninjabetic.com/
Sugar's the Bitch, Not Me @ http://sugarsthebnotme.blogspot.com/
Six Until Me @ http://www.sixuntilme.com/
DSMA @ http://www.diabetessocmed.com/
Texting My Pancreas @ http://www.textingmypancreas.com/
Not My Cell @ http://notmycell.blogspot.com/
Diabetesaliciousness™ @ http://diabetesaliciousness.blogspot.com/
Type 1 Diabetes Memes @ http://type1diabetesmemes.tumblr.com/
And anything else that shows up in my twitter feed! I hope to expand my list!
10 May 2012
It's my diaversary today--ten years with this.
My mom took my to the ped on this date in the evening, ten years ago, because she knew. She recognized the symptoms, especially after I chugged a whole container of apple juice and a gallon of milk in one evening.
We just did the "pee on a stick" test, one of the old ketone strips that also checks pee glucose. The colors instantly changed and went as dark as possible within seconds of being placed in the cup of my pee.
I was thirteen years old. I knew what this meant. I mean, I'd been watching my older brother be T1 since I was eight.
We went home later that night, knowing that I'd be going in for "official lab work" the following day, since an insta-changing pee stick test apparently isn't good enough for some people (AKA insurance). My parents held me down as they did a finger stick using my older brother's meter. It was one of the "new" One Touch meters, much better than the One Touch Basic that he used to use (mainly, this thing could fit in a normal person's pocket). My mom hit a nerve in my finger when she pressed the button on the lancing device. I think this is the reason I really really prefer alternate site testing, besides playing the violin and needing to save my fingers for that.
The meter read HI.
We all cried.
I was remembering what I'd seen my older brother go through: the screaming from getting shots, the horrific bruises from the Medijector, him punching a hole in the wall when he was low, people being jerks, seeing the pump and knowing it was an option, watching him miss a semester of middle school because he was just so sick...
Was that going to happen to me?
I refused to use the same meter as him--I wanted something that took less blood. I got the new Freestyle meter. I was put on Humalog and Ultralente. Two weeks later I would have the new MiniMed Paradigm. I would have to miss my friend's birthday party sleepover because my parents were paranoid about me going low.
I was initially incredibly ticked. I hated needles, and this only made me hate them more. My friends started dropping like a nuclear bomb had gone off.
It was only a later did I realized that this was a very sick stroke of luck. I mean, I started feeling better after not being in DKA and not drinking my volume in liquid. But when I look back on this time, I can't help but place my diagnosis as what stopped my being abused.
It started when I was 10, before i started 5th grade. About 2 1/2 years later, it stopped. He was diagnosed when he was in fifth grade. I don't know, maybe I'm reading to much into it, but the timing just...gets to me.
Things have gotten better since then. The meters have gotten better and smaller. More meters are on the market that require less blood. We have CGMS now that aren't the glucowatch that zaps you. We have better pumps with awesome features, like doing the math for you and food data bases and smaller increments. We have newer insulins, like Lantus and Apidra. We have new medications to help with management, like Symlin. We have new types. I honestly don't think anyone I knew 10 years ago knew that LADA or MODY existed.
I obviously deal with depression on a daily basis, and I'm doing better than I used to. I have a wonderful husband who puts up with my super depressing days, my diabetes confetti, my heart problems, and all my other less than desirable quirks. Oh, and he loves me and is my bestest friend. We have an adorable kitten who attacks my pump when it alarms. We share our hatred of a beeping pump disturbing our sleep.
Who knows what the next ten years hold. Will we have a cure? I honestly doubt it. (Okay, I'm cynical and have been hearing "5-10 years from now!" for the last 15 years...) Will we have new tools? I hope so. I hope the meters become more accurate, that the CGMS continues to become more accurate and less intimidating. I hope we have a better grasp on the actual causes and the effects of all types of diabetes on the body. I hope we have a better grasp on insulins and pumps, and maybe the A.P. will actually be more than a neat trick. I hope that the understanding between chronic conditions and depression increases and that there is more support and more compassion. I hope that no one will have their lunch slapped out of their hands because they are diabetic. I hope that the media and the general population will start fact checking on all chronic conditions and stop misrepresenting them. I hope that there won't be discrimination. I hope that no one has to defend loving someone with a chronic condition.
I hope that these next ten years will be even better.
25 April 2012
Disability. Handicapped. Disabled. Those words leave a bad taste in many people's mouths and minds.
People make comments (and I don't think they realize how offensive these comments are) such as "I would rather die than have your disability", "I could never live with a disability", "How can you live with your disability?"
And then these same people, without irony, say things like "You should rejoice in being disabled!" or "Your disability is a blessing!"
And then they turn around and ask just flat out stupid questions like "You're allowed to get married?" or "How much does your disability drain our economy?"
And then they turn around, again, and wonder why people with disabilities are on guard and don't give them health updates.
It's no wonder that many shy away from the disability label.
There's even a discussion on tudiabetes about T1 being a disability. There are comments were people are genuinely shocked that T1 is a disability. Umm...diabetic children wouldn't be able to have a 504 in the US if T1 weren't considered a disability.
The Americans With Disabilities Act (ADA) states that a disability is
But I can understand the confusion. I don't always feel disabled, even with T1. When my bg is 101 mg/dL, when I'm just hanging out, when I'm laughing and enjoying life, I don't feel disabled. I feel enabled.
But there are other times when I've been up all night dealing with highs or lows, when I have "my heart thinks we should randomly have a pulse of 300 right now" episodes, when depression takes control, when any of these problems wear me so thin that I don't feel human...I feel disabled. I feel broken.
I want to be comfortable in my own skin, but that requires being comfortable with all the imperfections, the disabilities, as well.
But there are two sides to this tango, each holding a gun to the other sides head. What about cures for all these disabilities? Should I hope for better cyborg parts, better medicine to make my disabilities easier, but they won't go away? Or should I hope for a cure? Am I comfortable enough in my broken body that I think of my disabilities like my hair (it's there, and sometimes there are bad days)? Or am I frustrated enough with all the medical problems that I'm willing to give up things that are apart of me?
Do I regret being disabled in all the ways I am? No. Am I over thinking this? Maybe.
13 April 2012
So, my mom told me if I didn't write down the funny things our kitten did, she'd hurt me. I love you too, Mom.
Anyway, this is Tigerlily.
She's 14 weeks old, and with a face like that, you know she has to get in to trouble.
She has recently discovered that she loves going under to covers, along with all the other cat things, like trying to help me type this post. Did people have problems with cats on typewriters?
Anywho, she likes going under blankets and chewing on things, like toes! I guess toes and fingers are delicious. The first night she did this she had been super hyper all day--running up the cat tree, down the cat tree, up the cat tree, down the cat tree, hang from a scratch post like s monkey, chase the feathers, run around the sofa 50 times, run to the bedroom, run to the sofa, run to the bedroom, run to the sofa, attack the human's hair...well, you get the idea.
She was a little calmer at bed time, and I thought after all that running she might be a bit tired and sleep, instead of pouncing on my head. She slowly disappeared below the blanket, carefully following my body line. Her soft bunny like fur tickled all the way down and I did my best not to squirm. She finally settled at my toes.
Oh, crap, not my toes. My feet are so ticklish and I am known to kick when tickled-just ask my dad or my husband. She started gingerly licking my feet. Okay, not too bad. I can handle this. She started rubbing her face all over my feet. Gross...think about how grossly weird it is that she's rubbing her face on your feet and not how much you want to squirm away. The next thing I knew, she was darting up out of the covers, pounced on my head, jumped from my head to the floor (it's not a far drop), ran under the bed, came out the other side, attacked her scratch post, jumped up on the bed, somehow landing on my feet, ran back up to the top of the bed, tried to shove her nose up my nose, and then scurried back under the covers back down by my feet...where she waited.
She surfaced a few minutes later, probably because I wasn't paying attention to her amazing obstacle course abilities and to the star athlete, and I was instead checking Facebook and twitter. In the glow from my cell phone, she gave me this look like nothing weird had happened, and proceeded to flop across my face where she purred herself asleep.
11 April 2012
I know that secret that you have, the one about what happened between fifth and seventh grade. I know about how you're dealing with it, and guess what? You're right. It will destroy your family when your parents find out.
You're doing your best to hold it all together and your falling apart at the seams, but no one would guess. You've made yourself numb, and that's the only thing keeping you going.
You're terrified about the pain in your chest that started in your 9th grade English class--you remember the first time you felt that pain, the feeling of someone taking a butcher knife and stabbing your heart. But you refuse to tell anyone about that pain.
You're one of those people with birthdays early in the school year, so you get to be 16 for most of your sophomore year. You're driving to school, all the way in a different town, because let's face it, that other high school would have made you even more miserable.
I'm sorry to inform you that life will indeed get worse before it gets better, and it does get better. You will be betrayed, you will be abused, and you will wonder if it is all worth it in the end.
There are good times, though. You will get to go to Japan, you will have a puppy who will love you no matter what, and she is a sock thief. Your younger brother will adore you no matter what as well.
As much as you hate yourself and do incredibly stupid things (like doing a max bolus without eating and then taking NyQuil in the hopes that you won't wake up. Spoiler: you always do), you will go to college, but not where you think you will. That will all work itself out. That boy that you think you love in high school isn't for you. Listen to what he wants for you, and know that you could never live an entirely submissive life where you could not be intelligent. He doesn't want you to go to college, to learn, to explore, to have a life. He will cheat on you and break your heart.
But you will find your best friends, your people. All this time you have felt like an alien, like nothing about you is right. You're an introvert, an engineer. These people in high school are not meant for you. They are not worth torturing yourself. They are not worth contorting yourself into things you are not.
I can't say that everything is perfect for you seven years later. You'll still be battling depression. You'll have gone through diabetes burn out. You'll finally have a diagnosis for that stabbing heart pain. You'll have a kitten who likes to knead and lick your jugular. Is she trying to kill you? I have no idea, but she's adorable. You'll be married to your best friend.
You will start to feel better, but it's a long road.
But I know you can make it through it all.
Describe your ideal diabetes “support group”? What would you discuss?I'll be honest. I love the DOC. It's my kind of group. I'm rather shy in real life, so the internet is awesome for introverts like me. I like mulling things over before sharing them, and I like having the internet time buffer for that.
That being said, some things just need to be done in person, face to face. Hugs. Hugs are a face to face thing. I can offer all the e-hugs and internet yummies, but real life hugs and tangible gifts always trump the electronic ones.
Having chronic conditions is a complicated thing, and not just all the medical minefields. It's a pain in the butt. You're supposed to accept it, even rejoice in it. No one, besides your chronic condition comrades, gets what it's like to have that disease.
I love my friends and family, but I can't talk to all of them about my conditions. It will more than likely turn into one of the following:
- You should try X because X will cure you! And it's your fault for not being cured by now because you should have tried X ages ago.
- Awkward silence
- So...ummm...that's absolutely terrifying. Are you going to die?
Ideally, we would be able to laugh, to cry, to celebrate, to be angry, to be scared, to offer support, to ask for and offer advice, and to most of all walk that fine line of "This totally sucks, but I'm glad I know you", but we'd also be able to talk about things non-d related. We are people with diabetes, yes, but we are people first. I want a group of people, a group of friends who at least comprehend the emotional and physical toll that this disease takes.
This post is my April entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/april-dsma-blog-carnival-2/
23 March 2012
Anyone have those days where you swear the universe is aligned to give you a terrible day?
I'm having one of those days.
I think my site is blown. I know it's terribly bruised. It also might be hitting a nerve.
My heart is having a freak out day. Part of the heart problems is fainting or nearly fainting, and I've been having that sensation all day. I think I passed out earlier this morning, since I was sitting on the sofa watching the news and the next thing I remember is waking up and sprawled out on the sofa. Sitting up makes me dizzy.
I don't think I'll be exercising today.
22 March 2012
I do want to say, first and foremost, that every person has the choice, and it is their choice. At no point should anyone be forced to disclose health issues or be silenced about their health issues.
Since this is the internet and there is some veil of anonymity, I would like to share my side of my sibling's and my disclosures, without going into too much medical information.
My older brother was diagnosed as type 1 when I was in second grade. He was in fifth. (For those of you trying to figure out ages, I was 8 and he was 11.)
I remember him being terribly sick for weeks. He was in DKA. No one in my family history has had type 1, so they weren't looking for it. They thought it was the flu. I remember watching him waste away on our living room sofa.
I remember, being 8 and having absolutely no clue what anything was, asking all the stupid questions and being a general annoying younger sibling, secretly worried about him. I remember when he was well enough to go back to school, and everyone knew. There were many people with similar families to mine--one child in my older brother's grade and one child in my grade, so news spread amongst siblings.
I remember this, because I remember having other 8 year old kids come up to be and tell me that it was my fault that my older brother was so sick, that God was punishing him because I was such a terrible 8 year old.
My older brother hates to disclose, because these are the types of responses he normally gets. It's your fault. God is punishing you. You must have done something terrible to deserve this. The fact of the matter is not a single entity on this planet is responsible for his diagnosis.
Flash forward a few years. I'm in seventh grade (13), my older brother is in tenth grade (16), and my younger brother is 2 (he's a caboose!). My parents knew that something was wrong when I drank a gallon of milk and a whole thing of apple juice in about an hour. Looking back, they should have enrolled me in gallon challenge competitions. I could have kicked butt.
At that time, I looked back at my older brother's diagnosis and the backlash that we both got. I was absolutely terrified of what my classmates would say. And, almost like I'm a psychic, I got the same responses as my older brother. It's your fault. God is punishing you. You must have done something terrible to deserve this.
I knew better. I'd been watching my brother and knew the basics. I knew it wasn't my fault. I mean, I was the weird kid in the grocery store begging my mom to buy broccoli and veggies instead of candy. But it still gets to you. It's hard not to start hating yourself when your so called friends don't stand by you and tell you you're a terrible person.
I met some awesome friends later, and they have been super supportive through the years, but my past experiences have always made me wait to disclose.
I remember in high school having teachers (and peers, but I honestly didn't expect much from high schoolers) say really stupid things to my face, because I was seen as "less than" because of my health issues. My AP Physics teacher, whom I adored, told me he wished that he could lower my grade in his class because I was missing so much school. I thought about it, and logically, if I was doing just as well or better than my peers even though I was missing "half the classes", doesn't that mean I'm doing super awesome? If I got an "A" by the curve standards even though I had been missing class for doctor appointments, don't I still deserve that A? Apparently he felt the need to tell me that I didn't and that my "stupid 504" was protecting me.
I remember in college sitting in classes. At the beginning of each semester, instead of looking over the syllabus and eagerly reading the text book, I was analyzing the teachers and my peers. Should I tell them? Do they deserve to know?
I ended up telling many professors in my department, mainly because I was dealing with them constantly, and it's kinda hard to hide checking and bolusing in the lounge.
One day in our lounge, there were a group of my peers talking, and I decided to join the conversation. Apparently, in hushed tones, "There's this diabetic chick in the ECE department." I guess I had escaped them knowing. I got really wide eyed and said, probably a bit too loudly, "THERE'S ANOTHER ONE? WHERE?!" and I started looking under tables.
I know. I'm hilarious.
There were a few of the annoying questions, which I tried my best to not be snarky. I guess since these people had been around me for a few years, they realized that I know what I'm doing, especially since I kicked a few of their butts in grades.
I remember going to parties where we'd eat pizza and play board games. Of course, because pizza, my nemesis, I would check and bolus and check again and bolus again. So, naturally everyone at these shindigs knew. Instead of asking me questions, directly, though, they'd ask my husband. He told me the questions they asked, and I'd answer them so he would have answers. At one point though, I told him to tell them to just ask me the questions, because this was a very roundabout way of asking me, since I was answering them anyway. It's awkward when people talk about you behind your back, but I'm thankful that I didn't get all the really stupid comments, which I guess there were a number, including things about cinnamon and tea.
All this boils down to these questions:
Will I tell my employer? Definitely not at first. Will I tell my coworkers? Definitely not at first. Will I tell my friends? Definitely not at first.
Even though a lot has changed in the nearly 15 years since my older brother's diagnosis, I still have those old memories of disclosure race through my mind, and I ask myself Is it worth it? Do you deserve to know?
This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/march-dsma-blog-carnival-2/
20 March 2012
Let's back up a bit.
I recently moved after finishing my undergrad, and so I now I'm with my husband. He lived three hours away for a semester while I finished and he worked. I really only saw a doctor once or twice a year while in college. My endo from back home is in the process (or, so it seems) of transferring his practice to the hospital, and when I did visit when I went home, I, along with the other "seasoned veterans", got to go to the new assistant. I guess our job was to show this new assistant how the diabetes game is played.
So, I hadn't really had a seasoned doctor at a dr appointment in about five years. Oh, sure. I had the labs done, but nothing was really done about the results. I mean, what are they going to do? Yell at me across the country? They're busy; I'm busy. We'll maybe discuss the next time I see them...in a year.
Anywho, I scheduled doctors’ appointments (yes, plural. I am so proud of myself.) after I got back home from winter break. I was not in good shape. Senior design had stressed me. Living away from my husband stressed me. And all those medical things that I probably should have been more aggressive about treating stressed me. All my medical problems were kicking my butt.
As I said to my mom on the phone, "Well, senior design is bad for your health, and I have the lab work to prove it."
I was going in last week for a follow up endo appointment. I'd been there twice before. Once to establish myself as a patient (and get prescriptions...) and once to have a test done.
That first visit was the first time in (and I kid you not) 6 years that a doctor had listened to my entire list of symptoms with my heart problems. Turns out, when you have multiple symptoms that occur at the same time, they tend to be linked!
Anywho, at that first appointment I got to go back a week later and get injected with radioactive goo so they could watch my heart work. Oh my goodness, that was like the most boring hour ever, and I still don't have super powers.
Last week I got to go in for my blood test results (the usual HbA1c, thyroid, kidney, blood count, vitamin D, etc.) and the results from the radioactive goo test.
All my blood work came back...not good. At least my thyroid is working.
As far as the heart stuff, here's a picture of a heart:
So, this is all super-duper bad. How do I know? Because I looked on webmd, and this is what it told me:
29 February 2012
What can we do to help stop depression from hitting our community during the winter months?
After last week's DSMA, which I elaborated on my response in my last post, I saw how many other PWD are affected by depression. And something kinda odd happened.
Even though we're dealing with the lying bastard that is depression, we're not alone. There are people who understand what I'm going through, people fighting the same fight, and that made me feel hopeful. I am not alone. You are not alone. We are not alone. I know it sounds stupid, but this was an epiphany for me.
I have my family support system, and they are the best thing in all of time and space, but they don't always comprehend. It's liberating to know just how not alone I am in this fight, that there are so many people slaying their own dragons, and we can help each other through this.
But I guess this is supposed to be a post about tips and tricks to fight the lying bastard, as per the blog carnival prompt. So, here we go.
1. You are not alone.
2. Your fellow PWD are here to help you.
3. Family and friends, as much as they'll never know the hell that depression puts you through, sometimes physical hugs, shoulders to cry on, and having someone physically there are just the things needed.
4. It's okay to feel like crap. Diabetes is not easy. Life isn't easy. You are allowed to have time and places to vent.
5. You are allowed to be happy. (I think this is the hardest for me)
6. You do not have to settle for something.
7. You are allowed to have fun and be silly. This could be anything from playing with Lego bricks, to looking at adorable pictures, to tickling someone (who is willing to participate), to singing in the car or shower, to dancing like no one is watching, to taking silly pictures of holding twine or spatulas, to just reading a good book, and everything in between.
8. You are allowed to love.
9. You are worthy of being loved.
10. You are allowed to ask for help.
16 February 2012
#Q 1. What would you do if a relative or close friend was diagnosed with diabetes? #dsma
I've actually gotten to experience this from both sides! My older brother was diagnosed before me, and my younger brother was diagnosed after me.
I think the main thing to keep in mind is to let them take the diagnosis at their own pace and to offer assistance, a should to cry on, or what they need, but not force it on them.
My younger brother has lived in a world where his older siblings have had diabetes for as long as he can remember (even though I was diagnosed after he was born), so to him, diabetes was normal and cool. He hasn't wanted the support group and he wanted to jump in and be just like us--testing and pumping and all that jazz. He does occasionally want someone to talk to, because honestly parents and relatives can't get it, but this is all offered on a "if you want to basis".
#Q 1.5 Would your action change depending on what type of diabetes? #dsma
I don't think it would, over all. Yes, the different types have different action plans, but it still sucks. If they were asking about actual medical things, then I'd probably have to do research, but that's for all diabetics. I want to make sure I have my facts straight.
#Q 2. What would you do if you overheard someone taunted about having diabetes? #dsma
Well, this is going to sound weird, but it really depends on how I'm doing. With anxiety and depression, confrontations are sometimes easy, other times the thought of seeing another person makes me burst into tears and I want to hide away. I'd like to think that at the very least I'd try and do something to comfort the person, maybe even stand up for them.
#Q 3. Have you or your child been taunted or discriminated against because of diabetes? #dsma
#Q 4. What actions did you take to stop the taunting/ discrimination? #dsma
If I tried to stand up for myself, it got worse. If I tried to do anything, it got worse. The only way it got better was by ignoring them and avoiding those people like the plague.
#Q 5. What would you do if you had 10 minutes to talk to the President about diabetes? #dsma
I would try to explain that all forms of diabetes need research. Even amongst people who have the same type of diabetes, there is so much variation in the day to day lives of a person with diabetes. You can do the same thing, day after day, and get different results each day. Research to help increase the quality of life of people with diabetes is paramount, and many different options need to be explored.
So, there you have it.
14 February 2012
So, what will be here? Diabetes stuff! Maybe other medical stuff! I'm sure that's totally what everyone wants to read about. I'm pretty sure this is going to devolve into a very boring "here's what I ate and here's my symptoms" with the occasionally interesting bit. I hope that I'll respond to things like the DSMA Blog Carnival, but don't get your hopes up.