Rewind about 25 years. May 20, 1990. What if that day was just like any other? What if I wasn’t peeing like a racehorse every very-so-often? What if I wasn’t staring aimlessly at the T.V. whilst sitting about five inches away from it? What if I wasn’t exhibiting signs of type 1 diabetes?
What if I never became a type 1 diabetic?
This idea is kind of useless. I do have it. But I’m not so sure my life would be much different. Well, my childhood at least. Diabetes was a part, not a way, of life for me. I was never limited in my activities, etc. I played sports. I hung out with friends. I went to sleepovers and birthday parties. I got caught up in typical childish drama. No one dwelled on the fact that I was a diabetic. My mom did a good job in seamlessly folding diabetes into daily life. Not that it wasn’t beyond my notice, I just was a kid.
My high school and college years though…if I didn’t have diabetes, I would have been gold. Wait. I “didin’t have diabetes” for years; I lived like I didn’t have diabetes. Whoops. Honestly, if I didn’t have diabetes, maybe I wouldn’t have been affected by depression as severely as I was. It was debilitating to a certain degree. My life spiraled out of control…but I would like to think if I didn’t have diabetes, I would have gone to class and made more of my time and potentially been in a very different situation now. Maybe I’d be in a job that I loved, making a gazillion dollars a year. Maybe I would have invented something. Cured something. Made a difference. Maybe I would have been a doctor…writer…teacher…circus performer…absolute bum.
Who knows? Fundamentally I would have been the same. I would come from the same family. I would still look exactly like my mom and act exactly (creepily) the same as my father. So, maybe I would be the same…maybe I’d be worse. Diabetes sucks plain and simple, but there are things in the world that are worse.
As I sit here losing my trains of thought and keep staring at the horses running around in the field behind my house, it hits me that this all doesn’t matter and is complete bullshit to even ponder. I do have diabetes and it is now so ingrained in me that I can’t even imagine being without it…it’s kind of a security blanket because it helps explain some of my wackiness. As I said before…it’s a part of my life. Not my way of life.
***Before I delve into my latest problem, please note that the feelings and opinions here within are my own. They aren’t putting anyone else’s feelings, thoughts or actions down. I am merely trying to convey where I am at with this topic***
I’ve been thinking a lot about kids lately. They surround me whether it be my friends’ kiddos, Facebook photos or just random discussion. I’m on the brink of turning 30 years old and B and I have been together for somewhere in the neighborhood of 4.5 years, so naturally, the question of “are you having children?” comes up more and more frequently. And more and more frequently I get to feeling awkward, sad and a little bit judged.
“Do you want children?” Yes and no – depends on when you ask me. I mean, I haven’t ruled out the possibility 100%. Theoretically I do want one – I feel like I’d be missing out on some huge part of life by not creating one. But what stops me is: what type of life would I be giving this hypothetical child? I’m not sure I ever get passed that. So, “when are you having kids” becomes complicated for me and the short answer that always springs to mind is probably never.
If you want a rational, quick answer, this ramble is probably not for you. Hell, I can’t make heads or tails of it most days myself. As I said, I’m approaching 30 years old, which I know isn’t old…but here comes that pesky thing I carry with me all the time: diabetes. Diabetes scares the crap out me. I know some people are willing to take this risk, are positive and that millions of diabetics give birth to healthy babies all the time. With all the technology, good control and support a diabetic can get during this time – it’s a very, very doable thing.
But I’m always stopped short. Could I live with the knowledge that my child could turn out like me? Would that be the worst thing? What if something goes wrong? What if I do something to mess everything up? Would I feel guilty? What about complications? What about MY complications? Am I in a position where children are even a smart idea? Can I even have children?
I have enough complications from diabetes currently to keep my life and mind occupied right now. How will this affect me further during pregnancy? My eyes are already f-ed up: how much further would they and could they go? Then everything goes a step further: I’m terrified that for one reason or another I wouldn’t be around for them later.
All these thoughts and worries consume me and make me anxious. I feel that pull to have kids of my own, but maybe I just can’t. I’m too selfish with my time and my own shenanigans to complicate anything further by having a little human being being my number one. I wasn’t my own number one for a very long time and I still have a long haul to go.
Every time I’m questioned, or hear that B was questioned, is like a dart thrown at my heart. I feel like most people cannot understand why I might not have a mini-me and everyone’s quick judgment and reaction to the “oh, but you gotta have kids!” is just that: judgment. Whether I choose to take giant leap of faith and work towards becoming pregnant, or I patiently wait for my brother to have kids so I can be “cool Auntie Ashley”, it really is no one’s business but B’s business and mine. It’s my body and my choice and at the end of the day, I just want the best life possible for everyone. Hey – at least I’ll never need a babysitter!
I promise maybe to come up with a positive post next time 🙂
Do you ever feel like a walking, living, breathing diabetes? That’s how I’ve felt lately. What do I mean by a walking diabetes? You know: you’ve become that person with the auto immune disease. All you talk about is diabetes. All you think about is diabetes. Even the side stories, the tangents are about diabetes. You catch yourself dreaming about low blood sugar – and you wake up in a pool of sweat. When others are talking, you find yourself thinking, “yeah, try that with diabetes.” That’s been me to a T.
Oh, and it gets better. You just know in the back of your mind that some people have to be rolling their eyes at you – if they’re still listening. I catch myself, talking about diabetes, and physically trying to stop myself because I know that people are sick of it – hell, I’m sick of it. I have diabetes – other people know. I had eye surgery and am having a hard time lately – yeah, other people know.
Is my life that boring that diabetes is what I’m becoming? Seems that way right now. I’m just having a rough time with diabetes. I feel like I’m the only one around for miles and no one can commiserate. The worst is how short I am with people at the moment. They’re trying to help and offer advice. My mom, who basically has lived with type 1 diabetes for 24 years through me, is trying to help. Everything comes out/sounds to me as preachy advice or some condescending lecture. (I want to say right up front that I logically understand that this isn’t what this is and that my loved ones are just trying to help me)
I want people to talk to, but I can’t stand to talk to anyone. How is that for a vicious cycle? Maybe I’m falling down the rabbit hole of diabetes depression. Maybe I’m finally settling down post eye trauma drama and I’m crashing. Crashing. I’m taking care of my diabetes – maybe at 95%, not the 115% I need to be. I know I need to do basal rate testing and start taking a look at my eating habits…all that diabetes jazz.
I just…don’t want to be diabetes anymore. I just want to live with it.
I’m trying my hardest to continue focusing on all of the good that is happening with my diabetes. My control is infinitely, by leaps and bounds, at the extreme opposite end of where my control used to be. I’m recovering from 3 surgeries and doing well. I’m adjusting to my new way of seeing. In addition to two silicone oil bubbles, I have two contacts to help me see…my right eye can see well enough to get around and function almost at the normal mark and my left is still playing catch up (understandably so).
I am now considered “farsighted” which I don’t completely understand how. I can’t see far or near…but alas, I’m not an ophthalmologist or optometrist. I am having a heck of a time seeing up close…argh!!
My second to last lingering complaint for where I am at this point is I am suffering from the wackiest double vision. Oh. My. God. It’s the most inconvenient thing EVER! There is, at most times, two of everything. My eyes seem to point in different directions….which leads me into my biggest complaint.
Dependence. I currently have to rely on family and friends a lot. I can’t drive. I have a hard time navigating stores. Reading some things has become difficult. I just hate depending on people. I hate the waiting. I hate having to ask someone to go out of their way. It’s just frustrating. I know they (most) are happy to help me out right now…but it makes me angry. I’m on the cusp of being able to do more on my own right now…but only the cusp. It’s like a kid that just wants the training wheels off of their bike already yet no one has a screwdriver.
I try not to dwell on that kind of crap – no reason to drag myself down and stress about it. It’ll all be OK. I have a couple upcoming appointments and my ophthalmologist knows what’s going on (I seem to see her over my lunch break around the hospital a lot)…writing it all out has helped relieve some stress of it all – it is sounding stupid, small and petty to me now. I should just be thanking my lovely stars for where I am.
I can see, however unfocused, and that is all that matters.
Being a PWD is a lot like being Rocky Balboa. How, you ask? Well, let me explain. I was watching the movie that started them all – the original, very first “Rocky” movie the other day and it just kind of popped into my mind and stuck. Being a person who deals with diabetes 24/7/365, I kept ticking different attributes of Mr. Balboa off on my fingers as they went by. Yep. I do that. Uh huh. Diabetes is like that. Sure. I feel like that.
- Rocky is a fighter.
- Just his profession alone is like having diabetes – or any chronic condition for that matter. Every day, we wake up to take on whatever fun things diabetes decides to throw at us at any given time. Bring it on, ‘betes!
- Rocky trains. A lot.
- Cue “Eye of the Tiger” and mentally call up the scene where Rocky runs up the Art Museum steps. Or better yet, mentally cue Rocky pounding raw meat. He runs. He punches the bag. He’s bloody and banged up. We train. A lot. We learn every day about diabetes and different technologies and treatment methods. We prick our fingers. We bleed. We train.
- Rocky takes on challenges that might seem unattainable.
- Consider: Rocky Balboa side-by-side Apollo Creed. Apollo is bigger. He’s more prestigious and has a far better record than Rocky. Diabetes can seem daunting and hard. Diabetes IS daunting and hard. Some days, diabetes can seem downright impossible, but a PWD doesn’t shy away from that. We take it one day at a time and we can, will, and DO attain our goals.
- Rocky has a good support system.
- Rocky has many people in his corner, plus a woman who loves him. One of the best things for a PWD is an excellent support system – family, friends, health care professionals, the DOC…you name it. Support comes in my different shapes and sizes, but it’s always there.
- Rocky doubts his decision to fight Apollo at a point in his training – he doesn’t think that he can win…
- One night, Rocky comes home and sits on the bed with Adrian and says that he is not sure he can beat Apollo in the fight. As a PWD, we doubt ourselves a lot about a lot of things. Diabetes is not an illness of absolutes. We are never and can never be 100% sure. What works one day, doesn’t the next. Unseen things such as stress or whatever the weather is doing on a particular day can sink our boat. Doubt is part of the deal.
- …but he still fights anyway.
- So, PWD have doubts, like Rocky, yet we forge ahead anyway. We merely need to find ways to help us deal with the questioning and doubt…and move past the peskiness. We diabetics know a thing or two about rallying. Diabetes is in a lot of ways like an uphill battle, yet our legs are strong and our shoes are comfy.
- Rocky doesn’t always win.
- PWD don’t always count carbs correctly, or calculate insulin as needed – whatever the daily epic fail might be. Trying to be perfect is an imperfect idea. Rocky had a record of a handful of wins, 25 some losses and he loses to Creed (don’t worry, he comes back in “Rocky II” for the win…). The point of Rocky is he keeps going and doesn’t give up.
- Rocky, despite any doubts or cold feet, doesn’t give up.
- I think that’s enough said. PWD should never give up. This illness sucks, but always know there is someone out there willing to listen and help. ALWAYS.
- Rocky doesn’t always win.
Always check to make sure your order – anywhere – is correct. As a diabetic, we (well, we should) be taking insulin according to what we’re eating and how many carbs are in that certain food or drink. Our blood glucose kind of depends on it.
Today, before my provider meeting in clinic, I ran to Starbucks. I. Love. Starbucks. Coffee in general, really. I always order a Grande Skinny Vanilla Latte which has 17g of carbs and I bolus accordingly. I have never had a problem. So, I take my insulin…and after the meeting, I check my blood glucose. 463. Wait. What?!?!?! 463? Seriously, diabetes? SERIOUSLY? I haven’t come down much since. And I feel like absolute junk. Upon further review, my only idea is that they did not give me a skinny vanilla latte and it was the full alarm, bells and whistles, non-sugar-free, full fat version. With my luck, it had extra sugar sprinkled on top. Damn. I even thought half way through, this tastes even more delicious than usual, but I was up so early this morning that any caffeine would have tasted like manna from the gods. Again: damn. Starbucks: you mean.
I’ve been stewing about this for a few weeks now. Stewing over the fact that my CGM has this fickle, grating, uncooperative mind of its very own. I am, to say the least, a little frustrated, angry, and generally a little disheartened by its performance thus far.
If you haven’t scrolled down to my earlier posts, I sport the new Medtronic 530G with Enlite – in purple, of course. I am extremely happy with the pump. Amazingly so for my needs and wants – I have noticed a drop in my blood sugars, I don’t have to worry about a zillion shots all day long (how annoying is it when you just want to bolus for something teeny-tiny such as 2g of carbohydrate in creamer to go along with the elixir of life and you have to whip out and waste a needle for one paltry unit of insulin?), and I don’t have to look like that drug addict one table over in a restaurant.
But…well…damn. I know that sensor readings aren’t going to match up with actual blood glucose readings from a finger stick – I understand that, I just thought it’d be at least in the ballpark! (I have been assured that they should be) My readings have been absolute WHACK. For example, the pump will want to shut off (the Medtronic 530G is programmed to suspend if a person’s BG goes waaaaay too low, but you guys already knew that…), telling me I am 50mg/dl with double down arrows when in reality, I am 110mg/dl. Or vice versa: I am 190mg/dl, yet the CGM is reading 349mg/dl and rising. Did I mention this is all while I should be stable? I mean, what the world? Further more, there have been two calibration errors – well, yeah, that is what happens when your sensor reads 86mg/dl and you’re really 176mg/dl. Also, it’s upsetting knowing that something so small as (unknowingly) rolling over the sensor and laying on it overnight can throw the numbers way out of sync. I’ve gotten to the point of frustration where I’ve turned the sensor off and went CGM-free for days on end. I’ve had about one stretch where all seemed copasetic.
I called Medtronic’s HelpLine today for some answers and well, I’m not 100% sure I got any real answers I can use…at least right away. I’m going to reconnect tomorrow morning and see how everything goes…Through looking over my data and troubleshooting if I have a faulty transmitter (which I apparently do not), the only explanation I was given (besides hearing again about how numbers rarely are matchy-matchy, we’re supposed to be looking at trends here…) was that either the lot on the sensors are bad (which, again, was told probably not)…then it’s my body and sensor placement. I’m not putting them on wrong – I made sure of that. I do not for one second believe that these sensors hate every part of my body…they’ve been all over my abdomen and shh! I’ve tried the back of my arm (I’ve already been told that is not an approved site, don’t worry) but alas, to no real avail.
So, I am currently at a frustrated impasse. They are sending me a replacement sensor to see if that makes a difference – I’ll cross my fingers. I am very grateful that I have this type of technology at my disposal, and do think that this information is very valuable and that I want it – but I just wish it would be working better. I don’t expect to get this technology and POOF! have it work perfectly the first time and every time; there is trial and error and kinks…but is it too much to ask for everything to at least be on the same playing field? I’d be fine if I was on second base and my CGM were up to bat…but I feel like my CGM is off in the stands eating a hot dog with chili, onions and mustard.