31
Jan

I did this to myself

I know I have no right to complain.
My site was on day 4, and as an upper-butt-cheek-infusion-set, it has seen quite a bit of wear over the last 4 days.

My 6-day-lifespan sensor was restarted and was on day 8.
I postponed changing my site and sensor last night. "It's wasteful to change a site when I still have a half-day of insulin left."   "The infusion set doesn't even hurt that much. I'll just sleep on my other side again tonight."     "That sensor worked so well for its first round! It will be fine for a few more days."
The lies we tell ourselves to justify not having to change a site. Not having to feel that jab, twice, as two devices are inserted for 3- and 6- day spans (or 5 and 10, if you tend to stretch out your supplies like I do). All of this led to me sitting at work this morning with a splitting headache and a thirst like you wouldn't believe (I'm at almost 2L of water so far. Been at work for just over 2 hours). Cal reminder alarm prompted me to check my BG and to be quite honest, I probably wouldn't have bothered if not for that alarm. My cgm had me at 8.4 and dropping, so I wasn't worried.
Still, though. I should calibrate.

Fingerstick, 18.6 (335 mg/dL).
Well, then.
Working on a set change with this kind of headache is challenging. I rip open an alcohol swab, then stop. Squint. Rub my aching temples. What was I doing? Oh, right. Syringe, wipe top of insulin bottle. Use now-disconnected pump to calculate the correction dose. Deliver correction.
Another alcohol swab. What was this one for? Wipe top of insulin bottle, feeling vaguely like I've already done this. Think back, pushing through the throbbing haze of red that clouds my head and makes coherent thought a distant memory. Aha! Yes, I did do this.
Do it again. Change infusion set. Charge transmitter. Replace sensor. Look at the mess of medical waste and wonder why I didn't do this yesterday.

Looks like I have some tidying to do...

2
Mar

Gluten-free diet and lots of lows

A couple of weeks ago I had an appointment with Patricia, the dietician in my endo's office. The GI Dr recommended that I meet with the Rd to get strategies for converting to a gluten-free diet. He asked if I would be willing to meet with either the dietician in his office or the one in my endo's office. Sure? Why not. I called that day to book an appointment with Patricia, and later that month we sat down together to talk about my celiac diagnosis, what I'm eating, how the new diet is affecting BGs, etc.

I started the conversation by pointing out that since the celiac dx, my consumption of wine and cider has pretty much skyrocketed, while preparation of healthy home-cooked meals has dropped to an all-time low. She gave me some strategies for making small changes towards a better/more balanced gluten-free diet, then asked if she could download my pump to review my data while I was in the clinic.

Sure? Why not.

I hand over my pump. She links it up to her Carelink Pro, generates a few reports, and leaves briefly to pick them up from the printer. When she returns, she sits at her desk with a highlighter and attacks the reports in front of her. A few moments later she pushes a paper showing sensor data towards me.

"Do you see what I've highlighted here?"

"I --"  .....  "Lows."

"These are severe lows. 1's and 2's. This is a week's worth of data."

I review the paper again. It is speckled with yellow dots. A LOT of yellow dots.

Waking up in the morning? Yellow dot. Breakfast - spike city. Post breakfast? Yellow dot. Lunch time? Moderate hill. Post-lunch? Yellow dot. Pre-dinner? Yellow dot. Post-dinner? Spike, plateau, moderate descent. Bedtime? BG within range.

Overnight? Yellow Dot City.

Patricia looks at me with kindness in her eyes and says she would like to call Brenda, my RN, in to help troubleshoot some of these stubborn lows. I shrug. Why not?

Enter Brenda. Brenda reviews Yellow Dot City. Brenda does not look happy about Yellow Dot City.

Brenda shuffles through the papers to find the one that lists my pump settings. She turns to me and her gaze sort of softens. She tells me that we need to do something about these lows. She explains that if I'm comfortable with her approach, she wants to slash my basal rates quite significantly. She suggests modifying one of my meal carb ratios as well, explaining that these things should leave me a little bit higher than I usually aim to be. She backs this up by showing me studies and research documenting how above-average-glucose levels over time can help to restore low glucose sensitivity. I take her word for it -- usually I'm interested in things like this, but I just can't bring myself to want to read the paper this time.

Brenda tells me it looks like I'm burnt out. She says she knows that I know that something isn't working, but analyzing the data in order to fix it is a daunting task, and she says she understands that I'm not feeling up to it.

She asks me to download my data in a few weeks and provide that to her. She's not asking me to do anything differently - not wanting extra monitoring or checking BGs. She wants me to carry on as usual, but with higher BGs. Her goal is to have me running between 8 and 10 for a few weeks, which will hopefully bring back some of my low glucose symptoms and allow me to feel lows coming on.

She doesn't ask me to do anything new. Nothing extra. Just a one-off data download in a few weeks so she can review the progress.

I know I'm lucky to see my doctor in a clinic where my team (RN, RD, MD) can call on one another to support my care -- but never have I been more appreciative of having a team who recognizes what I'm capable of and works with me to try to fix things.

23
Feb

A moment of hesitation

Sometimes these moments of diabetes fatigue hit me out of nowhere.

Last night my pump site was itchy and sore. I'm not due to change it until tonight, so I figured I'd ride it out and just put up with the sore site for a day.

This morning I woke up late, rushed in to work without testing in the morning, and only checked when I got in to the office. I'd been going on my cgm values, which were a little high but nothing too critical.

My BG once I got to work? 18.7.

The most likely culprit is a site that's not absorbing properly any more. I know that to fix it the next thing I should do would be an injection (not a correction delivered through my pump!) and a set change.

I open the "diabetes drawer" at work, pull out my spare reservoir and Mio set... and I pause.

I just don't want to.

I'm actually finding myself contemplating getting the vial of long-acting Levemir that I keep in the fridge at work and switching back to shots for a day or two.

I know that a sore site makes me much more likely to want to take a break from pumping. A sore site is a reminder that I've got a plastic cannula below the skin, making a tiny part of my body itchy and uncomfortable.

For now I've delivered my correction and am waiting on the whole set-change-or-not issue. There is no need to decide right now.

It is uncomfortable, painful, and unfortunate, but it is not currently life-threatening. I can afford to take a minute to try to remind myself why I started pumping in the first place.

30
Jan

The need for space

Some days it feels like I just need everyone and everything to fuck off.

The painful tingling in my hand from pinched elbow nerves can fuck off.

Diabetes can fuck off.

Eosinophilic Esophagitis can fuck RIGHT off.

Yesterday was my endoscope appointment with the gastroenterologist. He took biopsies of my duodenum, proximal esophagus, and distal esophagus. Why biopsy the esophagus (twice!), you ask? Well, apparently because mine is "furrowed".

What in the world is a furrowed esophagus, you ask?

A furrowed esophagus is one that has abnormal lines or trenches in it. It is also a classic sign of eosinophilic esophagitis, an allergic response to food that causes symptoms pretty much only in the esophagus.

Symptoms are things like dysphagia/difficulty swallowing (I don't have that), persistant heartburn (don't have that either), and  esophageal food impaction (aka when food gets stuck in your esophagus and you need a doctor to use a tube to push it down to your stomach. I definitely don't have that).

Samples are being sent to a lab, and I follow up with the doctor in a few months to get those results. Both the intestinal biopsy (for celiac) and the esophageal biopsies (for EoE) need to be analyzed to confirm or disprove these conditions.

Today I am pissed. I an ANGRY. I want to lash out. I feel like hitting things and screaming, because WHAT THE FUCK.

I am making a great effort to stay quiet about this today. My friends and family have been nothing but patient with me, and I really don't want to push my luck by putting them through any more fits of yelling and crying.

Boyfriend was trying to be all supportive and helpful last night by telling me that "Yes, it sucks, but it's better that you know. It's always better to know these things."

So today? Boyfriend can fuck off too.

19
Dec

Diabetes and depression: 1

This is not hard to talk about.

I actually haven't had problems talking about it to family and coworkers. Friends, too, although I haven't told all of them. It gets tiring, having the same conversation over and over again.

It's difficult to write about it. I was a star in English class in high school. I studied sciences in university, so I didn't spend much time in languages or the arts or courses where I could improve upon my communication and literary skills. I had one mandatory English 101 class; but that's about it. Writing, to me, requires clearly presented and well-articulated thoughts and arguments. Since I was a child I've always loved to read, so writing, to me, is reserved for masters of the art. Writing is reserved for people who do it well and exhibit skills and expertise in communication.

 

I do not have these skills. I started blogging because writing, even if I did it terribly and without any measurable success, felt like it helped me to clear my head. I feel better about whatever mess is in my head when I sit down and map out thoughts and arguments.

 

I've been ignoring or avoiding writing and blogging lately. My head has felt like more of a mess than usual, and that mess is very difficult to sort out into manageable piles that can be dissected into coherent and meaningful posts.

 

I am trying to sort through that mess.

 

It started last summer. I recognized that many of the feelings that sent me to therapy in the first place were edging their way in to my psyche. I slept a lot, spent more "me" time just resting and relaxing and avoiding big group outings and when I did attend these big group events, I found them exhausting. I slowly lost feelings. I used to feel happy, excited, enthusiastic, and passionate. I felt angry, furious, frothy rage-filled wrath. I felt love. I felt a deep affection, a longing, and a devotion to people in my life who inspired these feelings. I felt tired, but a tired that was so deep in my bones that the exhaustion went right through me because I deserved the feeling. I felt life, and felt it so strongly and deeply because I truly felt like I had earned it. That...changed. It's impossible to say how or why, but slowly that slipped away from me.

 

I started revisiting my therapist in September. I had seen this particular therapist last year, and found her to be excellent. I could feel that something bad was going on, so early September I gave her a call. Her schedule was pretty full, but I was able to see her at the end of the month.

 

I think she could tell right away that I was struggling. Back when I first saw her she had helped me to work on balancing the demands of diabetes and everyday life. She helped me to work through those things, and helped me to figure out my life so I could feel like I could handle it.

In my sessions in October I received assignments like:  exercise. Walk the dog. Take those walks with the Boyfriend. TALK to my family about when I felt crummy.
I tried these things. I really did try.

By November, she encouraged me to visit my family doctor. She talked about me taking some time off to recover. My family doctor agreed.

I had some conversations with Boyfriend, and some of these worried me. I could tell he was worried. He knew that something was going on, something a little worse than just a temporary thing.  I hate worrying him. It breaks my heart to see him hurting and wondering whether his continued presence contributed to all of this.

 

My people wrote each other letters. My therapist wrote to my family doctor and recommended to him that I take some time off work. She also suggested that we consider medication. He agreed with her assessment, and started me on a course of antidepressants.

 

The first few days were rough. I've been having some significant issues with nausea, and the first three days of meds were the worse. There was a lot of vomiting.... like a lot. Soooo much puke. That's gotten better, but not significantly. I'm able to keep down food by dinner every day -- sometimes earlier! -- so it's still improving, but slowly.

 

It feels like I am still working through the diabetes burnout. The funeral this week didn't help. Time to myself has been good, I think, but still it has been a slow process.

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