so here’s the deal… I feel better when I do the shit that I know I should be doing (go figure)… get enough sleep, wake up at the same time, eat at the same times and on a regular schedule… walk in the am… and like magic my body needs less insulin, I feel better… and then I stop jacking up on caffeine and my anxiety totally levels out… I know it’s rocket science-y level shit. But here’s the thing, sometimes I still don’t do this stuff… I’m getting better. I’ve started a nutrition program through a friend and my sugars have become stable… like stupid ridiculous stable. I’ve upped my protein level, taken gluten out (again)… and I feel so much better, it’s like everything in my body is moving again. I’ve been walking in the morning too… that has made a big difference in the rest of my day, both with my sugars and with my mood, outlook… a lot of the time I walk down to the beach, I am always insight of the water, something to be grateful for — so many things to be grateful for… like being in a grateful mood right now, so next time I’m in a shit mood I can look back at this and remember that shit moods always end.
Yesterday I had to eat a bed time snack… I resent having to eat at night because it doesn’t match up with my health/fitness goals… but I was a bit low (80), too low to go to sleep without an assured dexcom wakeup 2 hours later… so I ate a rice cake with almond butter… and then another one, and then I ate almond butter out of the jar… because I triggered the hunger monster… and because deep down (sometimes not so deep down at all) I am SUPER resentful at Diabetes. Why should I have to eat when I don’t want to — it sucks. This morning I woke up in the 200s, a carb “hangover” if you will…I had two choices, I could say fuck it, skip breakfast like I prefer to, skip my walk because it’s “inconvenient” today, and sit right down to “work”… or I could do what I know works… go for a walk, down a protein shake, and start over today, at that moment… so that’s what I did… 12-ish hours later I’m back in the 140s and dropping down a bit… still fighting the fishtail effect from being so high… I should test and eat… so I think I will. I’m choosing me, my health, and trying to get out of my own way in the process. Life is good, the guidance is there… now I just have to put one foot in front of the other… xo
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.
So 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.
Casey’s take on hibernation
A few days ago I realized that I had stopped writing… for me that is not a good sign. It means that I am stuffing down my feelings and ignoring the pain, or taking the joy for granted. Writing, here or anywhere, helps me process life, whatever it may be at the time.
The biggest thing I have been denying lately is the omnipod… all aspects of it.
I basically told no one. my way of lying to myself. the short list was on a need to know basis — a friend I had dinner with (had to bolus), my parents (because they asked me direct questions and I didn’t want to straight up lie to people who care about me), a few others… but only in unavoidable situations. My first two insertions on my own were terrible. The third I did with a friend there and it was oddly okay. I felt like maybe I was getting the hang of it. I’ve even started to feel hungry again, still battling with avoiding food as to avoid messing with my numbers, but even being hungry is progress.
My numbers are good — even when I’m not eating… and thanks to the omnipod basal rate, I am receiving insulin all day, even though it is a very small amount, that is what is keeping me well. It is inescapable, I need this insulin to be well. even if it’s 1 unit, I need it. I have diabetes. If I didn’t have diabetes I wouldn’t need any additional insulin to be well. even though it’s small, it’s there… and I need it. I have diabetes. I didn’t even know that this denial was still in me until I started writing this. I feel like the kid in school that is forced to write lines as punishment… I have diabetes. I have diabetes. I have diabetes. maybe a few hundred more times and it will get it into my head. I am never going to function without help — even if there is better and better technology or a cure, I will not get better or live well on my own. that thought needs to die. I will not be able to move forward with caring for myself if I’m still holding out hope that this will all just disappear. like magic.
Maybe omnipod isn’t my biggest source of denial after all.
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
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.
Diabetes, you suck. I contributed, but you’ve pushed it over the edge. First, I was texting with a friend last night, so I didn’t get to bed on time (Fail #1), then I forgot to take my night time Rx (Fail #2), I took night time insulin (Fail #3), I dropped all night (Fail #4), I slept terribly because I was all hot from dropping and being low (Fail #5), I woke up feeling tired, sick, and shaky (Fail #6), I wasn’t hungry, but I ate breakfast anyway because I’m supposed to, it made me feel even more nauseous (Fail #6), I got to my doctor’s appointment late (Fail #7), my doctor’s appointment is actually for tomorrow morning (Fail #8), now I’m exhausted, nauseous, sugar is on an aggressive rise, and now it’s time to start working… fml. Fuck Diabetes. I would like to quit diabetes. If anyone knows how I can submit my resignation please let me know, thank you.
I feel like I am making progress at being “One Sophie” — I remember a time where I would proudly tell you that I had three Sophies — work, home, and family. While at the time I felt it was efficient, it left me feeling stretched thin, and accountable to no one. I was drifting. looking for something, but I didn’t even know what I was looking for. I have done so much work in the past two years to meet myself where I was/am at and progress from there in the direction of being my best self. I am proud of the work I have done, I am proud of the direction I’m heading. I know this may not sound diabetes related from the start, but really it is… being my best self, as it is possible each day, helps me see clearly through the anger and denial to help me continue to do the tactical things that keep me well, even when I resent it with every fiber of my being. My best self helps me to always behave toward others as I wish to be treated, and to think beyond my quick fuse temper and tongue. I am so thankful for the progress that I have made, and I am even more thankful for the journey that has brought me here and my path yet to come. I never thought I would be able to say/type those words.
I 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 just googled “Celebrate Everything” and apparently it’s a thing… I had no idea, but I love it.
Recently, friend quoted me back to myself, she said that I told her to “celebrate everything,” that everything could be a victory if you wanted it to be… her words coming back to me were inspiring, even more so because she was able to help me with the same words with which I was able to help her. Amazing shit. Those words continue to help me. Fine, I snoozed my dexcom and didn’t have a juice box the first time I heard it, but I got up when it went off the second time — that is something to celebrate. I may not be scoring 100%, but I DON’T NEED TO BE PERFECT — I should really write that about 20, mmmmaybe 2000 times, then maybe it will sink into my head. I need to learn to accept my best as my best and not set the bar so high that I feel like a failure everyday, with anything and everything… not just diabetes. I am an imperfect person. Sometimes I feel like that statement is a surprise to me, or a statement of failure, like everyone else has their shit together and I’m the only one struggling — with everything. Let’s face it, pretty much everyday is a fucking struggle.
I have been using the my Sugr app (very cool) to track my sugars and insulin, I’ve not been perfect about entering my numbers, but the reason I’m telling you this is because at the bottom of the screen where you enter your BG, Carbs, Insulin, etc. there are different icons to indicate which meal it is, how you’re feeling, what you’re doing… this has forced me to think about how I’m feeling several times in a single day, rather than ignoring it for weeks… pretty much every entry I would select the “stressed” emoji, to the point where it made me question, “Am I really stressed out all the time?” — the honest answer is yes. I feel like there is something oscillating in my core at all times… it’s been that way for so long it’s my normal. I don’t think that’s good. I’m going to try to change that. If fear and faith cannot coexist, then I just need to have faith that I am going to be okay. This is advice that is easy for me to give, but very hard for me to live. So this time I’m going to take my own advice and celebrate everything. Look for it on Instagram @sophiethacher — I’m going to try to post a #CelebrateEverything everyday…