11
May

Another endocrinologist visit

My recent Endo appointment was a strange one. I grew up with disappointment and lectures every 4 months from my childhood endocrinologist, so I'm no stranger to the guilt and frustration that often follows one of these appointments. This time around was a bit different though.

When I visited the hospital a few weeks ago to have blood drawn, I had to renew my hospital card. The woman creating a new card for me asked if I wanted to sign up for My Chart, the Web service that allows patients to see lab results and clinic notes for all hospital services. Of course I signed up for the service, so a few days later I logged in and was able to see my lab results prior to actually seeing my doctor.

This a1c was better that my last few have been - significantly better. I hit a record for new lowest a1c! Needless to say, I went to that appointment feeling pretty pleased. It was unexpected, but certainly not unwelcome news.

At least -- not to me. Dr. A was less than impressed.

Maybe she was having an off day. Maybe she was seriously displeased and her demeanor was just her way of trying to remain restrained as she spoke to me about the dangers of having the kinds of lows I've been seeing lately. Either way, we reviewed my data and agreed that this lower a1c was likely the result of overnight lows that often went untreated.

She made a number of changes and sent me on my way. I left that appointment feeling as though I had been chastised for not acting sooner. She's not *wrong,* per se, but UGH. This feeling is deeply unsettling. Even now, a few weeks later, I feel like I've failed. I feel like treating mild lows with temp basals is inviting in a worse low (which is exactly what she was getting at), and I've been reprimanded and sent on my way to think about what I've done.

I spent more than a decade learning from my childhood endocrinologist the many ways I could disappoint a doctor, usually using the twin powers of disinterest and lack of effort. Matching that disappointment, but swapping the cause out for burnout and lack of action, is a strange and discouraging place to be. ESPECIALLY when this time around, I've actually been trying as hard as I can for better #s.

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.

1
Nov

​Remembering the good to distract from the mildly inconvenient

I had an endo appointment 2 weeks ago. For the most part it went swimmingly.
It started with a resident bringing me into the room and incredulously gawking at the pump clipped to my hip. "Whoa! You wear a pager?? Don't see too many of those these days!"
I groaned inwardly, figuring this guy must be new and assuming that this would be a long appointment. I gently(ish) asked if he had spent much time on rotation at the Endocrine and Diabetes Clinic, and he said no, today was his first day.

That explained a lot.

I think I taught him quite a few things. I showed him my "pager" and described how this was an insulin pump: look, here's the reservoir filled with insulin, the tubing, the infusion set. I showed him my cgm, and told him cgms last longer than infusion sets, at 6-7 days instead of 2-4. I mentioned that there are a few different pump companies and at least two CGM companies in Canada, so the reports and data would look different from other devices. He was speechless when I brought out the printed Carelink reports that my doctor likes to see (Logbook, Sensor daily overlay, and Device Settings).

To kill time, since I knew I wasn't going to be able to get any helpful medical advice from this doctor who, though he meant well, was nowhere near trained enough to answer the questions I have regarding my care, I showed him my toe. This is the toe that was brutally introduced to a very heavy suitcase on the last day of my honeymoon, which caused bruising and swelling, eventually leaving me with half a toenail. Gross.

The slightly inept doctor assured me that it looked good, and all there was to do was to wait for the nail to grow back. I had assumed as much, but it was still good to hear.
When my Endo arrived, she was positively beaming. She told the new guy that he was about to get some serious training, courtesy of a "model" patient.

Yes, she actually used those words.

I know that NOT bringing Carelink printouts doesn't mean I am any less invested in my care. I know that failing to check my BG 4-10 times per day does not mean that a patient is any less worried about the eventual onset of complications. I know all of this. That said, I was pretty frigging ecstatic to be recognized for the work that I do prior to each most appointment(s).

We discussed most of the usual stuff: changed some basal rates, changed overnight insulin sensitivity, reviewed some blood test results. I found out that my a1c is at the most ass-kickingest that it has ever been, so I was pretty happy with this appointment overall.
We also talked about Eventual Family Planning. Husband and I aren't ready for that just yet, but my Endo took me through what I need to know when we do get to that point. It was then that I received a recommendation to see an ophthalmologist to have my eyes fully checked out prior to trying for a baby.
I see an optometrist every year, usually without much excitement. My eyes have stayed the same for about a decade, and although every appointment comes with the concern that This Will Be the Appointment Where I Get Terrible News Regarding My Vision, it hasn't happened yet. I've never before been referred to an ophthalmologis though.
Cut to today. I call the hospital where I see my Endo, and ask to be transferred to the Eye clinic. I ask about scheduling an appointment.
"No, you need a referral for that."
*sigh*. Ok.
Email my Endo's assistant requesting a referral. Email bounces back; assistant no longer works for the hospital.
Call hospital general line. Ask who the new assistant for my Endo is.
"We don't have an assistant or Program Administrator on file for that doctor."
*sigh*. Ok.
Call back, punch in the extension for my Endo's office. It is 11:20. "The phone lines are now closed. Calls to the Endocrine and diabetes Centre are answered between the hours of 8:30am to 11:30am and 1:30pm to 4:15pm, Monday to Thursday."

I give up, for today. I'm still at work, currently seething at the perceived injustice of having to wait two hours to make a phone call that I sort of think I shouldn't have to make to begin with, as a referral could have been provided at my appointment 2 weeks ago.

Still, I am humbled by the fact that I get to be upset about an inability to speak with my doctor, because I actually have a doctor.
Also slightly frustrated in admitting that the only person this hissy fit is harming is myself. Frustrated to admit that regardless of any delays, I still need to make this phone call (to get an email address, to email a request, to get a referral, to make another phone call to schedule an appointment).
It will get done. It has to, so it will. I'm allowed to be a little grumpy though.
So. Remembering the good hospital stuff (like how well that appointment went) to distract from the inconvenient stuff (aka the need to jump through hoops in order to get another appointment). Grrr.

14
Oct

Just dealing with it: easy, or not. Also, I get off-topic fairly easily.

I don't love anything overly simple.

I think if it seems too good to be true, it probably is.

I'm not alone. Tons of self-help and self-awareness articles will quote the same damn thing... but advice re: diabetes tends to be sort of scarce, when compared to general health advice for otherwise healthy people

Here's some of mine. It comes not from clinical studies or analyses thereof; rather, from life experiences of a girl who's still here after 23+ years. Or something.

Most of my advice is stolen. Literally stolen. The best piece comes from Joe Solowiejczyk: "You don't have to like it, you just have to do it.+"
Nothing says that you have to love the tens or hundreds of daily things you do to stay alive. You still have to do them.
I still work on this. I haven't seen a therapist in a while, but when I did, it was largely focussed on how tf to do this. In all honesty, I've been debating returning for quite a while, and with the wedding behind me I don't really have much of an excuse for postponing. This is a necessary conversation.

This is all completely necessary stuff. It's a little more than the average person needs to do to stay alive, but still. Necessary.
That doesn't make it any easier to do.
I know I'm lucky. After a solid week of job cuts, I am still employed. I still have some of an insurance category re: physio, therapy, etc (alllll under the same group). I can talk, I can decompress, I can try to work things out.

With my own prophetized future of Adult Who Has Her Shit Together, don't I kind of owe to to my future self to sort her current self out?

(and other reasons why I have a current buzzing sort of anxiety)
bzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.

 

 

 

+ I've had this quote pinned to my dresser for 3 or 4 years. I know it's from him, but I'm having a hell of a time figuring out where it came from. I believe here? https://www.youtube.com/watch?v=9HNOOIhyU04 ++

++ Part of the "Managing Teenagers with Diabetes".

 

*Also, Kinnickinick bread the best grilled cheese** sandwich. Like holy shit, that bread is fluffy as fck, even after being frozen and retoasted. I'm sold. I think it's fantastic.
** the cheese is
daiya cheese. Remember? I'm also allergic to dairy. 'sok. I remember. Can't bloody forget...

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.

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).

29
Jun

Eoe: the diagnosis

I've discussed Eosinophilic Esophagitis before, but last time around my reaction was admittedly a little strong. I hesitate to say that I overreacted, but only because I think that a new diagnosis is a legitimate reason to (briefly and within reason) lash out. Certainly beats keeping it bottled in, probably?

Since I last sat down to consider adding a new diagnosis to my "Lives With The Following Conditions" list, a few things have happened.

  • I saw my scope results on screen when I was at the hospital to see my elbow surgeon. The results, confirmed by two physicians at the lab, showed enough eosinophils in my esophagus to confirm a diagnosis of EoE.
  • After seeing these results I went and did my own research, since I still had about two months to go before my follow-up appointment with the gastroenterologist. It turns out that eosinophils are a type of white blood cell that comes out in response to inflammation or allergic triggers. Symptoms can range from almost nothing (like me) to severe (inability to swallow, allergic to proteins in almost every food, nutrients need to be provided through a feeding tube in the stomach).
  • When I saw the GI doc, I went armed with all of this information, as well as a healthy dose of fear that I would slowly develop symptoms as the condition worsened over months or years. I was ready to sit down and talk about how we identify my allergic triggers that are causing eosinophil flare-ups in my esophagus, then discuss how we plan to remove these triggers so we can halt the whole white-blood-cell-fest in my esophagus.

I was a little more than disappointed (shocked, maybe? almost outraged. Indignant? Probably all of the above) when my appointment was just over 4 minutes long and the doctor hardly wanted to discuss the EoE. He told me the scope results could confirm that I do not have celiac disease, but he wants to re-screen in 6 months to check for changes. He also handed me a diagnosis of Eosinophilic Esophagitis, told me he is not a specialist in it, refused to write me a referral for a specialist, and said his treatment plan is to "wait until I have symptoms, and if that happens, treat the symptoms with steroids."

Needless to say, I was not impressed. I (somewhat forcibly) suggested that allergy testing could help give me an idea of what is causing the high eosinophil count, so he reluctantly agreed to refer to an allergist. He was literally backing out of the room by around the 3.5-minute-mark, so getting him to hang around in the doorway long enough to agree to write that referral felt like a (very small) victory.

I later met with my family doctor to discuss how the GI appointment had unfolded. He and I agreed that we would see what the allergy testing revealed, and if there was a need for further consultation, he would write me a referral for a GI doctor who specializes in upper GI disorders.

After doing a bit more research and reading, as well as discussions online with others who are affected by EoE, I've come to the realization that I am not in bad shape. In fact, I think I'm much luckier than many others who suffer from EoE, as my diagnosis came early and before any symptoms had the chance to wreak havoc on my life (or my digestive system, or my esophagus...).

Soundtrack for this post (a little morose, but it's what's on my mind):

"These humans all suck; I'd rather be home feeling violent and lonely."

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.

 

7
Apr

Ketones and thoughts about lows

About two weeks ago I had an interesting experience with DKA.

 

I went to bed as usual, but woke up around 1:30 to go to the bathroom. I noticed my mough felt fuzzy, dry, and cracked, and (sorry: TMI moment coming up) peeing... hurt. This raised some alarm bells for me, since normally it isn't uncomfortable to pee.  I briefly panicked and wondered if this was the first symptom of a UTI. I've read several articles that discuss how UTIs are more likely to occur in people, specifically women, with diabetes, so given my symptoms, that was one of the first things I suspected.

 

I checked my bg and found that I was suuuuper high. The bathroom discomfort prompted me to check for ketones which, I discovered, were present in my  body in HUGE quantities.

 

I quietly wondered: Is it supposed to hurt to pee out ketones? <<file away under the "Google this later" category>>

 

 

I feel very lucky to have access to the healthcare team that I've got. When I realized I had ketones, I gave a correction bolus for how high I was and called my hospital. They directed me to the endocrinologist on call (since it was the middle of the friggin night), who called me a few minutes later to discuss what was going on. I explained the situation, and described how I don't usually have ketones, so I wasn't really sure what to do. Should I give extra insulin for the ketones? What if that extra insulin made me go low? Could I still go to bed with extra ketone-fighting insulin on board?

 

My worry was that if I gave the extra insulin that's normally required to treat high ketones, it would actually be too much, and in the morning I simply wouldn't wake up. I explained this to the doctor.

 

 

I don't think that anyone with diabetes has it easy, but I am pretty fortunate in that I am able to, with the usual loss of sleep and consultation with a medical team, tighten up my overnight insulin (basal rates) so that my blood sugars stay pretty stable overnight. This tends to change a few times a year, or when I experience extra stress, but for the most part I only tend to do a HUGE basal-rate-overhaul maybe 3 or 4 times per year. I only mention this to explain that when I go to bed, with basal rates that usually work for me and with the added benefit of my cgm, I don't always worry about whether I'll wake up in the morning. This night, I worried.

 

 

This story doesn't have a very interesting ending. I corresponded hourly with the on-call doctor, who gave me instructions for insulin and water consumption, and had me report on blood sugars and ketone levels until everything was back in range. I admit I did still wake up low, but it was a "mild" low ("mild" as opposed to "my glucose-starved brain is pretty sure I'm going to die, BUT maybe I can stave off death if I eat everything in the fridge"). I think I woke up at around 3.8, which for me is still a BG from which I can wake up. Low 3s or below means I won't wake up.

 

Looking back, it feels almost strange to think that at 3.8 I can accept that I woke up low but it was ok, whereas a 3.2 would probably have had me unconscious and missing my alarms, laying in bed until Boyfriend (or BFF) noticed something was wrong and gently nudged me, repeatedly, all the while shoving a ready-to-drink juicebox in my face and hoping I wouldn't throw it at him(/her) or drip the whole thing over a pillowcase (I've never done that while low... I swear.).

 

0.6 mmol/l (or around 10 mg/dl) can make the difference between waking up and not. I'm really not trying to be over-dramatic...just stating a fact.

 

It's weird to think of your own mortality. Some nights (some mornings...some days) I think I get closer to death than most. I guess one of the sad things is that you sort of get used to it over time.

 

 

4
Apr

When life gets in the way...

Lately things at home have been pretty hectic.

- We adopted two rabbits. They're adorable and precious, but litterbox-training baby rabbits is not an easy task. It involves a lot of urine-soaked newspaper...

- The dog got an eye infection. Then an ear infection. The the other ear...infected.

- He passed it on to the rabbit (so all 3 pets [2 rabbits; 1 dog] had to be separated, and one dog & one rabbit ended up on antibiotics)

- The dog then scratched his cornea and developed an ulcer in his eye. He's on meds every 3-4 hours over a two-week period, and for now he's stuck wearing his cone 🙁

- My lovely and wonderful best friend is getting married in a little over two months, and as her MOH I've been honoured and delighted to start planning a bridal shower and bachelorette. Also, wrangling friends and family members into planning sessions and coordinating details has, on occasion, left me just the teensiest bit frantic. Even more than that is the ridiculous idea that I need to pretend that I've got a solid handle on everything that's going on --  I'm not sure where this compulsive need to fake it is coming from, but the cool calm exterior that is presented (when in fact I'm tearing out my hair or panicking over details) to others involved in planning is proving a bit draining to maintain.

- Work has been insane. Like, insaaaane. I have, through the sheer luck of being the person who sits next to my group's manager, been tasked with updating some of our systems and processes on top of my regular work duties. It's been fun and challenging, and I've definitely been learning a lot as I go, but I admit it's been a uniquely challenging project.

- My elbow has been acting up. I'm on a waitlist for surgery on my ulnar nerve (that's the one that runs through two bones in your elbow), but I've got about another 6 months to wait, possibly longer. My symptoms have been ramping up over the last two weeks, leaving me trying to balance managing pain with my desire to actually use my hand. More on that later, but to sum it up, it's been making itself increasingly noticeable over the past little while, and nerve-blocking meds are no longer helping.

 

It feels very strange to look back over the last few weeks. Diabetes has actually taken a backseat to the drama of everyday life, and this feels very...strange. My Carelink reports show that I'm trending higher than I'd like, and to be completely honest I haven't done much about it. I know I have an upcoming endo appointment in about a week, and I know she'll make recommendations for changes in my basal and bolus ratios. Does that absolve me of any responsibility to review my data and make changes in response to what I see? Well....no. It does make it easier to just wait to let someone else make the changes, though. Lately it just feels like life has been too busy to let diabetes be as important as it should be, and my Carelink reports are proving that my diabetes care is suffering. I hope that this upcoming appointment can serve as the kick in the butt that I need in order to prioritize my health again, at least for a little bit.

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