Dear Diabetes, you suck.

a front end developer who also happens to have type 1 diabetes

Tag: Journey (page 1 of 2)

my reality

I had a surreal feeling this morning, walking through my apt — I heard the tick of my insulin pump, and for the first time I can remember I had no feelings about it. I noticed the sound, registered it and then kept going. It was a few minutes later that I realized what had happened. that diabetes had become a passive part of my life. my life is my cover photo. in the midst of the rest of my life, regardless as to how I feel about it, there is the constant of diabetes.

Life is phenomenal… but

tvsnowI have so many things for which to be grateful. I have nothing to be upset about. Yet I can’t shake the “but.” A friend asked me how it was going with the diabetes… and it was like my world re-imploded right then. If she had asked just how I was doing ,without the diabetic reference, I would have enthusiastically told her about starting to coach lacrosse and the amazing camping trip I went on last weekend, how work is boring, but good, and how Casey is doing well, friends are good and how life is generally amazing… but diabetes blows. there’s no way around it.

There is a frozen part of me inside — I don’t feel anything in reference to diabetes. If I do start to feel something it is quickly stuffed down and refrozen. I haven’t really talked about it, or written here because I don’t really want to address it. I want everything to be okay and my “easy” way to deal with it is to not deal with it, just ignore it, pretend that it’s not there, or that it doesn’t bother me.

I don’t know what else to say here. Usually I have strong feelings when I write, but recently I have been apathetic at best. actively avoiding tapping into feelings for fear of feeling them. that’s not going to hold out in the long-term. it feels like my brain is filled with the tv-snow… from back when that was a thing

[Enter Sanity Here]

Yeah… this is the text chain between me and a very supportive friend…

Pizza and Cupcakes

 

Seriously, god bless her… I am making no sense. taking no advice. barely “hearing” anything. also my stomach still feels like shit.

A win at something lame is still a win.

GoldStarSo I hate having to wear a pump. I hate the process of putting on a new one, but the other day I managed to put on a new omnipod by myself without having an emotional meltdown. This is a delayed reaction, but I am proud of myself. I was supposed to go to my friend’s house so I’d have support , but as I was waiting to leave, I thought to myself “this is stupid, I should just do it now so I don’t have to worry about it later…” and so I did it. fairly quickly, but still slower than I know I’ll be soon enough… I just keep thinking how slow and timid I was with the dexcom at first. I remembered to pinch the skin around the site, it didn’t hurt nearly as much as the first time. I even tried a new site, I have it on my upper arm right now — I think it helps that I have more fat there, but I’ve also caught it on door frames a few times… who knew I cut my corners so hard. Another thing down. I can’t help but hold my breath a little bit — every time I think I’ve got something down, a whole new pile of shit lands in my lap. I just don’t think I can take on any more.

I’ll be available today between 1-2 pm

detour-sign

I am definitely processing my OmniPod experience backwards, maybe because I was so overwhelmed that I wasn’t processing anything for awhile.

I had gone to my doctor and gotten the prescription for the insulin for the pump settings. I emailed the rep to confirm that she had received the settings from my doctor, figuring that I would have a few days, maybe a week to mentally prepare myself, I would watch a few videos, talk to my sponsor about it, make a plan to go to a meeting right before and/or after, and then…

“I am available today between 1-2 pm.  Can we meet then?” That is what the OmniPod rep replied to me… at 4:50am, which of course I didn’t read until 8:30am… which gave me a 4.5 hour window to “prepare myself.” Calling this a major detour would be an understatement. She apologized for the short notice, and said that she’s going to be away on vacation and wanted to set me up before she’s out of the office — I appreciate that. sort of.

…although, I had thought I’d have at least another week of denial…

I started this post before I left to meet her, but in the rush to wrap up work and get out of the house, I had even less time to prepare myself for the impending doom. okay, so I’m being a little dramatic… that’s how it felt.

In hindsight it was just as terrible as I thought it would be. I felt exposed in every way a person can feel exposed. I was on the brink of tears for half of the appointment. I wasn’t really listening to what she was saying, and worst of all, like every other dietitian appointment I have ever had, it was completely useless. I could have answered all those questions just from the literature that I had already read, add in some YouTube videos, and I’ve now more than doubled the useful information that was given in that appointment. If you do your reading your first appointment should be about 15 minutes, do the first insertion and then let me go home. And here’s the best part… I’m supposed to meet her again? For what purpose I asked, “to go over more information” she says… I’ll go because I’m committed to doing all the tactical tasks asked of me by my doctor/this disease, but I won’t like it.

I did not appreciate the bursting of my denial bubble. Especially not when it was with basically wasted time. Having now had time with the omnipod, emotionally I still hate it, tactically it’s working really well.

post-appointment vow of silence

I feel like this picture captures my inner monk -- part vow of silence, part gangster, lol -- Photo by Joel Collins

I feel like this picture captures my inner monk — part vow of silence, part gangster, lol — Photo by Joel Collins

after meeting with the rep I told know one. I saw two people I knew at the place I met the rep, so I was honest with them. I admitted to my parents and my friend I went to eat with that night, but that was it. and I was not going to tell anyone else. posting on this site was the next person I told. I don’t know why. I guess somehow it felt like if I kept it a secret then no one would ask me any questions and then I could pretend that it wasn’t there. I was embarrassed by it, more so than I was by giving shots — I guess because it was new again, or new to me…? I relaxed a bit and started being upfront when asked about diabetes, or about what was going on with me… since that is the thing that most occupies my thoughts these days.

I went to a friend’s birthday party last night and wouldn’t have felt comfortable in a bathing suit around any other group of people, it’s the first time anyone has seen me with both devices beyond a “yes, this is what it is.” I got a few questions, but they were inquisitive and supportive… “I prefer ironman or the bionic woman” being one of my answers. It was a great way to “rip the bandaid” on being open about this next step in my diabetic journey. Not that I need to tell everyone or be an omnipod poster child, but I have found that I feel better in life and in myself when I am open and honest in all aspects of my life. It might be awkward and painful now, but if I’m honest and address it for what it is now, the stress associated with it will diminish and the changes that I need to make become part of my life, quietly, without worry or difficulty. This is my experience with all other changes in my life. I feel rather zen while writing this, but it is true — when I can move into acceptance, or at least address why I am resistant or resentful, I immediately feel better — it is this honest that has helped me get to this point. now if I can keep that going… maybe I will be able to tell Diabetes to “shove it” from a place of honesty and acceptance.. hmmm, that doesn’t seem to totally fit… haha

What’s beeping? Oh wait, it’s me.

When I’m irritated by diabetes related beeping, it is usually my dexcom. make that was. My new least favorite beep is the OmniPod system, both the pod itself, and the PDM (Personal Diabetes Manager…I’l gripe about that name later). Last night I changed out my pod on my own for the first time. It was terrible. In addition to all the expected terrible — hate, denial, resentment, incompetence, I also was extremely annoyed. I was delaying changing the pod because I wanted to know how long I could go with it, and probably under the surface I didn’t want to replace it because I resent the whole thing and was afraid of doing it wrong.

Anyway, I let the pod get to it’s 72 hour/3 day replacement time, and then I let it go through the additional 8 hour buffer period. Through the buffer time both the pod and the PDM beep at you. It took me awhile to realize that it was actually me that was beeping, and that I hadn’t left the dexcom or omnipod receivers behind me (that was a fun two hour game). At the end of the buffer time the PDM screeches until you rip it off, or end it the session with the PDM — if you’re angry and don’t care that it might hurt, you might just rip it off, and it might just be okay anyway. After that lovely musical performance from the omnipod, and a not so delicate removal, I embarked on “installing” the new pod. I’m not sure if “installing” is the word for it, but I’m not sure what else to call it.

OmniPod First Setup

the debris from my first “installation”

So, I look at the pod. I go get some alcohol wipes, skin tac, tac away… and maybe a bit of bravery. I go to YouTube and watch some mom do the “installation” with a 3 year-old… if she can do it, I should be able to handle this. I’m an engineer for god’s sake. a fat load of good that’s done me. I stumbled through the process like a t-Rex in the canned goods aisle of a grocery store. it ended with a bang. it hurt more than I expected, I don’t think I had quite enough fat there. and then I was alone. well still alone, nothing had changed. I’m still bitter about having this stupid pump. not having it so much as needing it. and then life went on.

 

Death / Diabetes

FAMILY_GUY_DEATH

Death: formerly known as diabetes

So this is pretty much how I feel about Diabetes today. I am angry. I started on the pump. I hate it. I had to do the “installation” by myself for the first time. I have never felt so alone. It hurt. It was scary. I don’t have many options for location because I don’t have enough body fat. You read that correctly, being healthy, and not fat, is working against me. This stupid disease, which is supposed to be helped by exercise is actually also hindered by it. So it then doesn’t help that I continue to lose weight. I am trying to eat properly, but I just don’t feel like eating as I was before. I used to snack all the time, I’m not feeling like protein and even with the pump, every meal feels like a challenge, it’s just easier to go without, unless I absolutely need it. A sprite here or there keeps me up and alive. I hate this. I resent the world. I am angry and so sad all at the same time. For the first time in ages I felt like tossing stuff across the room, or taking a lacrosse shaft or a baseball bat to anything within my immediate vicinity. Beat whatever that is to a pulp, until it is broken in pieces, rendered useless to whatever function or task it was made to fulfill. I wish I could take on Diabetes like that. Train hard and then fight to the death. At least then I would have a chance to fight, a hope and a strategy to beat Diabetes — and hopefully leave a few marks and before sending it limping away. I do not want live with this stupid fucking disease for the rest of my life. I am so angry, I’m sick of this stupid shit. I would much prefer a cage match with a worthy adversary, even a seasoned veteran, than living this disease. I want to beat the shit out of this stupid fucking disease. maybe I’ll get a punching bag with “Diabetes” on it. Or maybe I’ll just collapse in the fucking sad self pity that is my life my life at the moment.

I just feel so alone. I know that there is help within my reach, but I fight against it because I want to be able to do this myself. I see asking for help as a weakness. this is a flaw in my character. I want to be able to take care of myself. without the crutch of anyone. whether real or imagined. requested or forced upon me. I do not want to depend on anyone and I do not want anyone in my life to believe that I depend on them. although I know that I will not be happy surviving as an island, my instinct is still to try. I am so glad that I was diagnosed as an adult so that I have the option of being responsible for myself from the beginning. Not having to wean a parent away from the controls. I am a capable adult. I do not want to be treated as a child. It’s juvenile diabetes, it doesn’t turn me into a juvenile.

I want to be true and authentic. I want to appear as I am. represent my true self. this is what I am working towards. In my mind my true self does not include diabetes, but I guess I will have to adjust.  fuck everything. I should probably go to sleep now. I just had a whole mini sprite, so hopefully I’ll be high enough to make it through the night without my stupid dexcom waking me up. Rant over. or maybe just paused.

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.

Diabetic Burnout

burnout0

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)

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