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...

4
Nov

13? Balderdash, says I!

Welcome, ladies and gents. It is November 4th, meaning that we are 4 day in to Diabetes Month.
For today, I would like to give you a glimpse into the frustration that comes along with this big ball of autoimmune-related shit called Diabetes.
Ketones start spilling out into urine at a BG of 13 mmol/L. This is a well-documented fact, check the American Diabetes Association or similar sites to confirm. 
So why, then, does a BG like this:

CGM reading of 12.8

CGM this morning


Confirmed via fingerstick:

BG meter value of 12.3

BG via meter


Produce ketones that look like THIS:?!

Ketone stick measuring high ketones

PURPLE ketone stick


Please excuse me, I'll be spending the rest of the day suppressing the urge to scream while mindlessly beating my head against a wall out of frustration.

30
Aug

End of Summer thoughts

Shaky. Fatigued. A bit brain-fuzzy, so really needing to think before I speak.

Putting things down instead of holding them, because if I hold them you'll see how my hands are shaking.

Asking a lot of questions that I *know* will set you up for a big in-depth response, because that way I can participate by making "mm hmm" noises while not actually having to speak or form a coherent response.

Leaning against the counter, because it's less risky that way. Less of a chance I'll tumble.

Smiling brightly and in a way that I hope looks reassuring, so that you won't ask if I'm feeling ok because I look a little "off".

For months, life has been about wedding planning. Now I'm not planning anything, and I think a combo of hot weather and a lack of wedding-prep stress has left me with some pretty serious lows. This week has been making it clear that I need to tweak my basal rates.

Thing is, I don't want to say that it must be so nice to be done planning.
I don't want to talk about my health. It's not nice to be back and be "basking in no wedding stress!". It's not. It's really not. It's uncomfortable and debilitating and leaves me feeling weak and frustrated.

So please, please don't ask how I am. I will hope you don't ask, and if you do, I will lie. I will lie and I'll hope you either don't catch on or, if you do, you'll get the hint and not pry. I am tired and I am low and when I'm not low I'm high. If the beeping of my pump doesn't give it away, my bright smiles and quick escapes should.

 

Just give me a bit more time to adjust to my new stress levels. Ask me again in the fall, ok? Ask me how I'm doing and maybe you'll like the answer a bit more come October.

31
May

Changes to pharmacy staff

I've been lucky, I think. I have gotten my prescriptions from the same pharmacy for over a decade. In that time, I have been on multiple medications. Had a few ohmygod I broke a bottle can I have a new one moments. Spent a LOT of time, especially as an adult, having in-depth conversations with my pharmacist about the effects of any specific medication. These conversations have increased in frequency since I entered the grand world of antidepressants.

A few years ago my pharmacy hired a new guy. I LIKED this guy. He looked up my file, knew what I was on, and would coach me, explain to me, reassure me everything I thought to ask about.

Today I had a very different experience.

We are switching from med A to med B. I entered this conversation expecting to be told what to expect as I stop taking med A (I imagine there will be withdrawal effects), as I start taking med B (hello, side effects), and as I increase the dosage of med B (impacts on my blood sugars, if the past is anything to go by).

What I got was drastically different.

I got a kind, soft-spoken old man who explained to me that I am to take one a day for 7 days, then 2 a day.

That's it folks.

Does it matter when in the day I take med B?
*shrug*  "No, it shouldn't. "

Will I notice any symptoms as I change from one medication to the other?
*kind smile*   *vague gesture towards the product leaflet I hold in my hand* "Ohhh,  maybe... it's mild. Anything is so mild. Maybe nausea...but mild. Not for very long. Mild."

Will this affect my blood sugars?
*eyes widen* "Oh, you have diabetes? It shouldn't affect..."
*he flips through the product leaflet, sees the little blurb where it mentions the drug may affect blood sugars*
"Oh it might, yes. But *shrug* a little bit. Not too much. If it's too much, you go back to the doctor."

Should I worry about changes in my insulin or carb sensitivity?
"Oh. You take insulin?"
"Yes, since I was 4."
"Oh ok. You ask the doctor for the tester [this is a statement,  not a question]. You check every 2, 3 days, maybe check every day and see what happens. Can you check every day?"
"I check my blood sugars 7-10 times per day."
I feel like screaming. I should not have to explain this to you. You have my file, you've just neglected to even skim the surface before handing over these drugs and trying to send me on my way.

He nods his head. "OK then. You check...good."  He looks at me, gives me a half-smile,  and gently pushes the bag of pills across the counter.

I sigh and turn to the other pharmacy staffer. I tell him I also want to pick up a bottle of glucose tablets and a box of alcohol swabs.

Once the useless tit of a pharmacist leaves the counter, I ask, "When could I come back and talk to [the other guy]?"
I'm told with a sad look that he's no longer working there. My face must have given me away-- I'm pretty sure the dismay was pretty evident.
He thinks for a sec "We have another girl...at our other location. She's good. She's a lot like the other guy. She's over there during the week, and here on Saturdays. You could come back Saturday, or... "
He grabs me a business card for their other location. "Call her. No-- call me first; I'll make sure she has a copy of your file available.  Then call her. She'll be able to help."

Today I'm thankful for that utter gem of a human being who saw my panic and stepped in to offer a solution.
Today. There's time later for being furious at the new guys complete failure to do his frigging job. For today, I'm just relieved that the new guy, that quiet, irresponsible man, isn't my only source of information about my medications.

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.

4
Feb

Celiac Diagnosis

I saw the GI  dr on Monday for a follow-up after an upper endoscopy earlier this month. I was optimistic that he would tell me things were the same as last year: Blood test was positive, scope was negative, so no way to confirm a diagnosis of Celiac disease.

No such luck this time. I received a positive,  clear message of "villous atrophy Confirms it: Diagnosis of Celiac disease. "

I'm still figuring things out. I haven't quite come  to terms with gluten-free life. This will be a lifelong journey, and for now I recognize that I'm barely scratching the surface. In fact, for this week, there's been a lot of substituting-wine-for-gluten. Is it a win? Probably not. Only time will tell. At least wine is delicious.

3
Sep

22 years

September 3rd makes me angry.

It's not intentional, but it's a problem. Maybe.

Have you noticed I'm not too thrilled about this year's dia-versary?

Last year when my diabetes turned 21 I picked a fight on twitter with a local Doctor-slash-media-darling and his followers who were commenting on a promotion by a fast-food restaurant (Dairy Queen, I think) who was donating a percentage of ice cream sales to JDRF.
This guy is a huge proponent of balanced plant-based diets and exercise, and is (it seems/if his book sales are any indication) a beloved member of the community in my city. I followed him on twitter because my Nancy is a fan of his work, and up until a year ago, I was as well.

On Sept the 3rd of 2014 I was waiting at work for some processing to run, I scrolled through my twitter feed and saw this comment. I saw red; my vision literally clouded over and I felt blind-sided by the rage that had built swiftly and with a vengeance. I was furious -- he was essentially saying that by choosing to purchase food products from a retailer who serves sugary snacks, despite this restaurant donating part of their proceeds to JDRF, the buyer was contributing to a diabetes epidemic.

I called him out, as well as some of his followers. I spent a lot of that day trying to explain to randos on the internet how hurtful and cruel their comments were.  I think that day was the first time I realized how difficult it is to express yourself in 140 characters or less, and I'm not sure I managed to convince anyone to change their minds on the issue.

Despite this, I remain convinced that my inability to clearly articulate my argument does not make me wrong.

This year I haven't gone on any internet-rampages; rather, I found my mood sitting somewhere in the "I dare you to fuck with me" realm.
I hate this. I hate diabetes. I hate how upsetting I find it and I hate how angry it sometimes makes me. I hate how there are days where I am so frustrated with trying to stay alive that I honestly and truly believe I might just give up, just lose the ability to continue to try, consequences be damned.

It crosses my mind every time I bolus for a large meal that unless I eat, I have likely just given a lethal dose of a medication. Sometimes this balancing act feels all but impossible.

 

None of this is coming out as I want it to, but that's about the norm as far as my diabetes-related-feelings go.

7
Aug

Family and diabetes/the frustration of having no impact

My heart is aching.

 

Right now I've got so much to talk about. There is so much I want to share and discuss. I met a PWD and his parents in my area when they came to my rescue the night before I left for a vacation. I've got a technique for extending the life of my sensors and recharging my transmitter without accidentally yanking the whole thing out (which I think is pretty cool!). I got in touch with the Ontario ADP office and asked the folks there to send me the documentation that was used to justify their decision not to cover CGMs and sensors along with insulin pumps, and I've been immersing myself in the research and papers that they provided.

 

Lately, though, I've been hung up on a conversation that I had last weekend.

 

Let me rewind a bit: Last weekend Boyfriend and I travelled about 6hrs south of home to attend my cousin's wedding. The wedding itself was absolutely beautiful, the bride; stunning, the ceremony; flawless. The reception and party following the ceremony? It was one heck of a party!  The only part of the evening that was in any way unpleasant was a conversation I had with my Uncle S (the bride's father). Uncle S has had diabetes for a few years, and manages it with Metformin and diet. As usual, when we get together we shoot the shit about diabetes, mental health, public and family support, etc.

 

This time around our conversation was a little different. My aunt and uncle are going through some difficulties and are currently separated. They spent a long time trying to work it out, but it looks like this separation is going to end in divorce. I hate seeing how painful it's been for both my aunt and uncle as well as my cousins, but I know sometimes there is only so much you can do.

 

This separation and impending divorce has taken quite a toll on my uncle. Last time I saw him (July of 2014) he was using e-cigs as a method of helping him quit smoking. He told me how the e-cigs were doing wonders for him and were helping him to quit the habit. Last weekend, though, when we spoke it was out on the patio at the wedding venue, as he had resumed smoking.

When I asked how his diabetes was doing, he said that his cholesterol and a1c levels were excellent. He told me that last time he visited his dr's office those numbers were great, and in addition to that, he had recently lost 40 lbs (likely due to skipping meals during the day and eating better/healthier meals at night, combined with the stress and challenges that accompany the end of a marriage). Knowing that a decent a1c isn't exactly the quintessential measure of diabetes care, I asked how his numbers were throughout the day. His response, that he didn't know as he rarely checked his sugars at all, blew me away.

 

Also, keep in mind: we were at a wedding. I had enjoyed some wine with with (and after) (and before!) dinner, so while I was equally (or more) talkative than usual, I was nowhere near my normal articulate and well-read self when I blew up and gave him a lengthy, repetitive, somewhat irrational but mostly still accurate lecture on the importance of testing his BG throughout the day. He tolerated my well-meaning but still mostly critical tirade, but by the end of this conversation I was positive that nothing I said had changed his mind about his method of treatment.

It scares me to think of how easily complications can set in. It scares me even more to think that if he ends up with any serious, debilitating complications, he won't have my aunt close by to support him any more. I know there's no sense in worrying about the future, but it feels hard not to worry when a specific version of the future seems guaranteed.

So that's what's on my mind these days. Makes it a bit tough to focus on the more exciting stuff (see above; the new PWD friends or the ADP research).

25
Jun

C'mon, Glu...

I have a Glu account. I subscribe to their daily surveys, so each morning I receive a "Glu Staff: Question of the Day" survey.

This morning's survey question looked like this:

image

Glu Survey of the day on June 23, 2015

I don't  always complete the surveys that appear in my inbox every morning, but I do always read the emails. If I feel as though I have something to contribute (or I'm just curious about the results of that particular question!), I will log in and check it out. This morning's survey definitely did not sit well with me.

Of all of the ways to start my morning, contemplating which complication produces the most of that gut-wrenching chills-you-to-the-bone fear is NOT my my favourite.

2
Jun

When health stuff is all I've got going on

Sometimes I feel like diabetes doesn't leave me with very much left to work with. When I ask someone how their weekend went and in return they ask me the same, I sometimes struggle to come up with a description for my days that doesn't revolve around diabetes. I have entire days where all I can remember is the thirsty, bloaty, exhaustion-filled highs that wouldn't come down or the trembling, sweaty lows that shake me to my core.

 

I know that life isn't all about taking care of diabetes. Health and disease management should only be one part of a complete and balanced life. It makes me wonder, at times, what has to give in order to find that balance. Do you give up on tight BG control in order to gain back some flexibility in life? Or give up some of life in order to achieve a better A1C? The bums-me-out-that-it's-one-or-the-other thing aside, I feel right now as though I'm erring on the side of better BGs, and as a consequence I'm missing out on other things.

 

I need to figure out how to fix that. Until I get to that, you can find me working on some solid non-diabetes-related lies to tell people when they ask about my weekends.

 

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