Dear Diabetes, you suck.

a web developer who also happens to have type 1 diabetes

Tag: BiPolar

I dream of genie

genie_aladdinThe fact that Robin Williams is no longer with us is no longer breaking news, in fact, the world may have moved on entirely. I have needed time to process what his passing has meant to me. Probably the largest gift in this tragedy is that it has opened the door to speaking about mental health and addiction, which largely remains a taboo topic, despite the overwhelming evidence that it is something that many people, in and out of the spotlight, struggle to deal with on a daily basis.

A daily basis, that is the part that I identify with — for me, my mix of diagnoses means that every move I make has to be a well thought out chess maneuver — with every possible outcome considered and three moves forward determined for each. I understand being tired. I have considered giving up. I wonder if there is respite in death, or if you take your neuroses into your next life. It takes a lot of work to be the self that I have to be for other people, at work, with friends and family — it’s not that I’m being fake or presenting a facade. It just takes work for me to be around people. Thank god I live alone, sometimes I feel like I collapse emotionally upon entering my apt, overwhelming relief that I can just be… if that’s happy or sad or depressed or melancholy, it doesn’t matter, I can just be, without need for explanation, justification or even communication.

I can’t imagine how emotionally draining being all of those amazing characters must have been… each one brought to life with his creative energy. An incredible outcome, but not without immense effort.  I am in awe of the his work — and of anyone who continues to navigate the world with any similar disposition as part of their story. Faith without works is dead.

Walking on Fire

fire-walkI thought my feet were just dry… I should remember to put lotion on them. I did, it didn’t change. I found myself taking off my flip flops when sitting down and putting the bottoms of my feet on the cool floor, soon the patch of floor under each foot was warm too, so I would move them around… I had never done this before. I’m pretty sure I’m not imagining this. I’m pretty sure it’s diabetes related. I’m pretty sure there’s a name for this. I’m going to pretend it’s not real. that worked for a few days. I think I know what it is, but I’m not going to google it, because maybe it will still go away. It’s not going away. I think it’s neuropathy. What does this mean? Is this what my feet are going to feel like forever? What if they get worse? that happens, right? I thought I was years away from “complications” what the fuck is this?! I’m back in half denial about even having diabetes and it feels like my feet are going to burn off any second. Steady numbers, minimal insulin, and burning feet? WTF. I just don’t understand what I did to deserve this. Why did this happen? the burning feet, the diabetes, the bipolar, the alcoholism… how shitty was I in a former life that I get to deal with all of this? Why can’t I just be normal?!

Or how strong must I be to be able to overcome these things? That is a question one of my good friends would ask me. I would grimace at her and tell her that she’s full of shit. Here’s to hoping she’s right.

So… I’m going to die and I most likely know how

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Sometimes diabetes feels like a slow suicide… suicide by lack of pancreas…

It recently occurred to me that I will probably die of complications with diabetes. I have considered before, that diabetes could cause death, through low blood sugar, seizures, dka, and other fun things — but I had considered death only in the acute… something bad happens and it immediately causes my death. What I had not considered, is that no matter what I do, I will most likely die because of diabetes, or some complication there of. Now there may be some of you out there who might think “No way!” or “It’s totally manageable, stop overreacting” or “You’re going to be fine… are you.. you know… on your cycle…” — but all jokes aside, the way I see it is that no matter what I’m going to get old, as I get old I will face the consequences of age and of long term semi-controlled blood sugar (even if we’re really good, we’re not a pancreas) — the affects of living without a pancreas will then compound with me being old and therefore contribute to and/or cause my death… bringing me back to my original point, that I will most likely die of complications related to diabetes. This fact is extremely depressing. I am 26. I am also considering how I am going to die, not in a depressive/suicidal* way, but in a seriously, when I’m old, assuming nothing random takes me out before then… this shit that I’m dealing with right now.. this diabetes bullshit… it’s going to kill me. quite literally. no jokes. fuck.

In some ways I start to feel this out of body “okay, if I’m going to die, then none of this matters…” — except in my case “this” is everything, and even if I’m going to live for the next ten minutes, something has to matter… I mean my dog is sleeping at my feet… she matters. Then something real, like what I just said about Casey being at my feet… it brings me back and then I’m left here, the same as when I started this post, just scared — a scared, 26-year-old type 1 diabetic, who will most likely die of complications related to diabetes, sitting at home, alone, writing to you from her computer…

And then I hear a friend, telling me to take it a day at a time — and then I want to punch that friend in the face and tell them that that is impossible. It feels impossible. Some part of me knows that I’ll be okay for the rest of tonight, and that I’ll probably wake up tomorrow, and that will probably be okay too. but when I get further ahead than tonight, I start to get scared again. this is where I hear my friend again, telling me to take it a day at a time. I still want to punch that friend in the face, but this time maybe I’ll settle for just ignoring them and continuing to be mad. and scared. and alone.

*Here’s my plug for mental health — if you or anyone you know is actually considering suicide, PLEASE seek help either through your own friends/family, or check out http://www.suicidepreventionlifeline.org/ — as a reminder, I am not a medical or health professional, please seek guidance from a professional as needed.

**Bunny Suicide Drawing by artist Andy Riley

Diabetic Burnout

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Turns out that fake smiles are the earliest sign of burnout — Dr. Sara Gottfried MD

I found that statement very interesting. Lately I’ve been exploring ways to influence by body (and my diabetes), such as diet and supplements, exercise, meditation, eastern medicine… and so forth. One of the more interesting things I have Dr. Sara Gottfried’s book, The Hormone Cure. Based on the quiz from her website, the non-diabetic related symptoms indicate that I am suffering the affects of both high and low cortisol*. While that statement may sound contradictory, when I read more, it described me to a tee. To summarize, cortisol is the hormone that your body puts out under high stress, the long term affect of consistent stress results in the burnout of your body’s ability to produce cortisol, resulting in low cortisol — which then comes with it’s own repercussions. Basically, staying stressed out all the time is bad, in many ways. We know this. It is not a shocking discovery, even though I appreciate understanding the science behind it. I have known for years that I needed to balance out my stress, I thought that if I just took time off from work that it would be enough — but even when I was on vacation, I was so tightly wound, my body effectively never got a rest. While there is no cause for diabetes, alcoholism, or bipolar — I can tell you for sure that staying stressed out all the time does not help any of those conditions either. This knowledge of the cortisol highs and lows has reenergized me to take care of myself in this part of my life. In brief stints where I have been able to step back and relax, I have felt the effects — the wave of calm — but I would always write it off as a “nice time,” but not something I could ever maintain. Realizing scientifically the damage I have caused/am causing in my body, I will add that to the reasons I think of when I take a relaxing breath, or the moment I take for myself, away from whatever it is — I want to take care of my body.

This may seem like a side step, but I promise it’s related…recently, I have seen more loss in the diabetic community than I’m used to — usually it’s all positive, or immediate problems — “I keep running low,” “Which pump should I get?” — but yesterday morning I read about a man who lost his 33 year old wife to heart failure, caused by type 1 diabetes. That was a reality check. Then all the support he received — and more stories of loss. It really puts things into perspective. If taking a few minutes a day to meditate, being calmer and less quick to retort, eating better and listening to my body… those all seem so trivial and easy, if they are going to serve me in keeping my life.

 

*Clearly, this is not official medical information and you (and I) should consult a physician for specific personal medical advice (ESPECIALLY when you have a condition such as diabetes, which affects all aspects of your body)

To eat, or not to eat, that is the question…

ShakespeareIf shakespeare were diabetic that is what he would ask. I am so confused. When making a decision about whether or not to eat, I find myself consulting my CGM instead of asking myself if I’m hungry. This ends up with late afternoons where I have had just a small breakfast… why do I feel faint? why do I have a headache? why can I not concentrate well? …ummm…. maybe because a kid yogurt and a waffle are not enough to power my brain and body all day. Yeah, maybe that’s it. What’s that you say? I’m low at noon? I have a solution… let’s eat a whole chipotle burrito bowl and some chips and not take any insulin… let’s definitely not treat the low and then wait to normalize and then dose appropriately for the food I’m eating… no, let’s not do that, let’s just eat the whole burrito and then deal with it later. #fantasticplan #not

I’m really having trouble with food lately and it bugs me because I was never that way. I’ve had the occasional “I’m so fat” thoughts, but no more than anyone who lives in a beach city in CA… you would second guess yourself too if you lived in the land of models and beach volleyball players, it’s like a parallel universe… I digress. How for someone so responsible in nearly every aspect of my life, meticulously taking statistics and experimenting with behavioral change to improve my life and habits in other realms of my life — can I mess up/ignore the part of my life that actually comes with built in numbers, statistics and tracking? Maybe I’m tapped out. Maybe I’m in denial. Maybe I’m still angry. Maybe I’m defiant. I think it’s probably a little of all of those. For whatever reason, I can’t seem to motivate myself around taking care of my diabetes… I snooze my CGM like it’s an alarm clock, even though I know (when thinking rationally) that it is an important tool, there to keep me safe, not just be another irritating beeping device in the over populated world of smart devices. But I guess there is the most important contingency, “when thinking rationally.” Not only can I not claim that on a regular basis on my own, add in diabetes, and BiPolar and it’s a rare day that I’m rational all on my own… more days I can talk to myself and come to a rational conclusion, but there are a significant number of days where my sanity could definitely be questioned, let alone my ability to think rationally. So I guess this post ends the way most of my posts have been ending recently… help.

Fuck You Diabetes… Boom. [Walk Away]

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I’m so frustrated… I want to be positive and learn about how to thrive with this and move on and be a better version of myself, but right now all I want to do is say “FUCK YOU Diabetes,” drop the mic and walk away, and leave diabetes feeling alone and rejected.

My main point of frustration is why diabetes has to affect everything else… I now have to consider diabetes in absolutely ever aspect of my life:

  • I’m leaving the house — do I have my kit? where do I put it? do I need to bring a purse/bag/backpack? will that be appropriate? how much of a pain is that going to be? Am I low? do I need a snack? do I have emergency snacks?
  • I’m going to work out — all of the above plus — do I have gatorade/water to stay up? where should I put my dexcom so I can hear it? do I make sure the trainer remembers that I have diabetes? does everyone else think I’m weird?
  • Waking up — where’s my sugar? meal calculations. eat. insulin. plug in all actions to dexcom.
  • Going to bed — where’s my sugar? test. plug into dexcom.  Insulin.
  • Meals — where’s my sugar? test. food calculations. what do I want to eat? can I eat that? should I eat that? do I care? test. insulin math. insulin. plug in all actions to dexcom.
  • Middle of the night alarm — test. juice box. does the alarm go off again? do I need more? am I going to die in my sleep? do I care?
  • Going to work — leaving the house plus — am I going to drop while at the office? will I be in a meeting? Is my alarm going to go off in the middle of something where I’m going to either look bad or have to explain my disease to everyone? do I have snacks that are meeting appropriate? what is everyone going to think if I’m checking my dexcom if they don’t know I have diabetes? Is it going to look unprofessional? yes, I know it’s a medical thing and people “understand” but still… is it going to look unprofessional? why do I care about this, but pretty much don’t care if people see me on facebook? what if I drop and forget a snack, or I’m stuck in a meeting away from my snacks, and I start shaking and pass out because I think it’s rude to step out at that time?
  • At any random time of the day when I feel off, different, too tired, too wired, or just randomly — where’s my sugar? look at dexcom. maybe test. do I need a snack?

Objectively… for the most part diabetes and I have been okay lately, my insulin has been adjusted, it seems that my pancreas isn’t quite all the way dead yet, but other than that it’s been fine. The Dexcom has cut the number of daily finger pricks and brought me peace of mind during those “why do I feel weird?” moments. But I just don’t care. My feelings do not match the objective view of the situation.

I don’t know if my emotions affect my diabetes or if my diabetes affect my emotions… I’m pretty sure it’s both in which case I’m fucked. Let’s not even think about the fact that in addition to diabetes, I’m bringing bipolar and alcoholism to the table… my emotional stability is about as steady as a warped balance board. Diabetes, you suck. Please just go away you clingy bitch.

Boom. [Walk Away]

An Explanation of the Frustration

On October 4, 2013 I went to urgent care during my lunch break because I thought I had a yeast infection…and I did, but I also had/have Type 1 Diabetes. I was 25 at the time, who gets diagnosed with Type 1 at 25, well me apparently, although to be fair, based on research I have done since, it’s not as rare as I previously thought, but seriously #solame.

So, one long stupid medical story later, I walk out of there with a diagnosis of diabetes (not yet confirmed as type 1 at this point), with a blood glucose meter, a bunch of prescriptions to pick up, and lab tests to be taken and an absolute bewilderment and denial.

So let’s make this more complicated, within the year prior to being diagnosed with diabetes I made peace with being gay, started the journey of living sober and I was diagnosed as BiPolar — so I had spent most of the previous year wrapping my head around those things, no where in my reality did I believe that I had the capacity to handle anything else, let alone anything else as life changing as diabetes. 

That survival/denial mode lasted for a bit, I went back to the doctor a few times, confirmed a Type 1 diagnosis, started on insulin, but over my first few months I became dissatisfied with the #JustDontDie type of care and sought out a more proactive doctor — this is where I’m at right now.

The moral of this story is that I’m learning to live with all of this. As cliche as it may sound, my goal is to thrive, rather than just survive. The guidance, advice and information I have received/been able to find so far does not adequately address thriving…only getting by, advice I am classifying as #JustDontdie, I am not interested in this type of advice. I want to learn the nitty gritty detailed information to help me thrive, not just survive each day.

I am an engineer by trade, sometimes painfully logical… like Star Trek Spock logical. I want all the details, all of the data, I will then process that data and determine the variables and the path that will lead me to the desired solution, the conclusion that I want — which in this case is to be a healthy happy person, in spite of everything else, any challenges, conditions, problems that I may incur.

So that’s where I’m at — I have started this blog as an outlet for my frustration, a chronicle of this journey, and to hold myself accountable for proactively seeking out information and resources that will support my goal of thriving as a healthy and happy person — and to put this information and my journey out into the universe with the hope of helping others, even if it’s only one other person, with their journey.

**Any entries pre-dating this one have been added to help give a full chronicle of my journey, give additional information and sometimes clearer context to future posts, and to help me process what has come before this point**

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