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.

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."

26
Feb

Upcoming elbow surgeon appointment

I called my local hospital today to check the date of an appointment.

 

I have nerve damage in my elbow. My last endocrinologist appointment had her earnestly holding onto my forearm as she looked into my eyes to tell me that the nerve thing was not the fault of diabetes. She said it was not my fault.

 

She said it over and over.

 

...and over.

 

 

I Tried. I tried to approach this appointment by asking information that I would need to know, just IN CASE I ended up needing surgery for the nerve damage in my elbow.

 

She sees riiiiiiiight through me. My endo let me try to ask a few questions about stuff like "What should I be aware of, diabetes-wise, if I have elbow surgery?"  before she held my hand tightly and told me that this was not my fault. At that point I was having difficulty stifling an endless supply of tears, so my further diabetes-related questions were put on hold.

 

I appreciate this more than she could ever know. It means so much to me to know that she feels like I didn't cause this through lax diabetes management not-so-many-years ago when I was an irresponsible teenager. As well, the fact that she felt compelled to reassure me despite me never directly asking whether I caused this tells me that she knows me better than I had imagined.

 

Still, though, I feel like the schedule (17 15-minute appointments scheduled in the first 90 minutes of his day?!) of my potential elbow-surgeon does not inspire confidence. I'm trying very hard to reserve judgement until I first meet the surgeon, but I have to be honest: his hospital staff's view of him as a doctor and surgeon does not come off as particularly impressive...   :S

15
Jan

My Celiac story

For the past few weeks I have been chasing something bad. I've been making phone calls, sending emails, knocking on doors, and trying to get answers, all for news I was pretty sure I didn't want to hear.

It started maybe a year ago. My dietician had a baby, so I saw a different dietician who was replacing her while she was on mat leave. I'm sure this woman isn't a complete idiot, but if I'm being honest I have to admit that her nutritional counselling didn't really inspire confidence in her skills as a dietician. We met, and right off the bat I told her my diet is mostly vegan. I don't eat meat and I'm allergic to dairy, so the veg diet fits me pretty nicely.

 

This woman kept trying to draw comparisons to a Paleo diet. I can't really claim to have an opinion on the whole Paleo/crossift lifestyle, but I know that a Paleo diet is drastically different from a vegan diet. I couldn't connect with this dietician in a way that allowed me to have meaningful discussions about foods and how different meals affect my sugars, and I left that appointment feeling pretty frustrated.

She did mention one thing that stuck with me though. I mentioned how I'd been trying to switch to more fruits and fewer bread-y foods for breakfast, as I was noticing that the bread-based breakfasts (bagels, english muffins, all that jazz) left me feeling sometimes a little bloaty, and I was usually hungry again sooner. I always assumed I felt hungry again quickly because a blueberry bagel, toasted to perfection then slathered with peanut butter, might be delicious, but it's not exactly overflowing with an abundance of nutrients. This dietician agreed that while that may be true, she mentioned in a sort of offhand comment "You might be celiac. You should ask your family doctor for a blood test."
Sensitivity and tact are not things that spring to mind when I think of this woman.

I walked away from that appointment angry and frustrated. I felt like we barely covered any of the things I wanted to discuss, this woman barely knew anything about me, and here she was throwing out ideas about me having a crazy life- and diet-altering disease.

 

I waited a few months and sort of stewed with the information. It wasn't until last May, when I saw my family Dr for something else, that I mentioned the possible celiac blood test and how my dietician had recommended it. He listened to my concerns, although looking back I'm fairly certain that my (slightly) biased opinion of this woman might have coloured the way I presented the information. My GP disagreed with the dietician and said he didn't think it was necessary to send me for that test, and I left that appointment feeling vindicated. I was RIGHT. She was WRONG.

 

My victory was pretty short-lived. I saw my endo in October, and by then I had done enough research to know that the link between Type 1 and celiac disease is pretty strong. I told my doctor the story so far and asked what her thoughts were. She didn't seem worried; I'm not symptomatic and don't have any clear gastro symptoms, but she was surprised that I had never actually been screened for celiac disease and agreed that it might be a good idea to get the test. She gave me two lab requisitions for bloodwork that day: one for my next appointment in six months, and another for the same day for the celiac tests. Her office promised me I would get a phone call to let me know either way.

 

Early in December I emailed my nurse to ask her for those results. She sends me A1C results and medical advice by email all the time, so I was hoping this result would follow suit. Instead, I received a very vague and unsettling reply that said she had passed my question to my doctor, who would be in touch with me directly.

That one raised some red flags. For the first time I began thinking about this as something ..... bad. Something serious. Something more than just a minor annoyance of a blood test that I was taking to be thorough. I waited a week, then called and left a message with her secretary. This was right before the holidays, so everything just sort of floated around in the back of my mind for about two weeks in December.

 

On January 5th I took a break at work to call my doctor's office again. I spoke to her secretary, who pulled up my lab results from October and told me that "the lab result had been flagged as 'high' for certain results". The red flags that were already up had turned into blaring sirens and alarm bells. She said she would email my doctor those results and request that I receive a follow-up, but my doctor didn't have clinic hours until later in the week so it may be a few days before I hear anything.

That sick feeling of dread in the pit of my stomach was getting pretty loud at this point.
Lucky for me I wasn't kept waiting very long. That night I went out for dinner with my parents, grandmother, and boyfriend. It was one last dinner before my grandmother got a plane back home for the holidays. I ordered a pasta dish, and brought home leftovers that I figured I would reheat for lunch the next day.

At 7:30pm I received a phone call. The call display said it was coming from the hospital. I felt sort of spookily chilled when I saw the hospital's name across the screen, and when I picked up, and it was my endocrinologist. She apologized for calling so late, then told me she was calling about the blood tests.

 

 

She told me I have celiac disease.

 
The rest of that conversation is kind of a blur. We agreed that I will see an gastroenterologist for a confirmatory endoscope test, and in the meantime I will see my clinic's dietician for follow-up nutritional counselling.
This is the beginning of the gluten-free part of my story. Forgive me if it is, at times, overemotional or awash with a flood of food-related frustration. This is just another piece of the increasingly complex pile of pieces that make up my "health." I can do this.

29
May

Week 1 on the pump

So...whoa. I guess I knew that it wouldn't be easy, but my first week on a pump was exhausting.  Hell, my first *day* on the pump was pretty scary.

I arrived for my pump start at 9am, and the first thing we did was to actually start me on the pump. I was so nervous/excited,  my hands were shaking a little :P. My nurse/CDE, Brenda, told me that for the first few set changes she wanted me to put the set somewhere on my abdomen -- somewhere I could see it, and also not someplace where my insulin absorption would change drastically if I exercised (like it might do in my thigh or butt). I noticed almost immediately after inserting the set that it was uncomfortable, and sure enough, it remained uncomfortable over the 3 days that I wore it (but more on my dislike for absomen sites later).

I got to eat breakfast next. Brenda and the nutrition student who was sitting in on a pump start (for credit hours, I think) left me for a bit while I chowed down, then came back about 20 minutes later to jump right back in to the pump training.

We next went theough "the checklist," which was essentially a (very repetitive) list of training items, most of which were things I already felt comfortable doing. We covered things like giving boluses, setting up carb ratios and insulin sensitivity, adjusting basal rates, etc. As far as using the pump goes I actually felt fairly confident, but I did want to spend more time learning how to make changes to basal rates & how to recognize when I need to make changes.

As we went through all of the training items, I did my 2-hour post-breakfast check (a little high), and my training went until around the 3.5-hour mark. After that they sent me home with instructions to check 2 and 4 hours after meals & twice overnight all week, and with a promise that Brenda would be calling me twice per day to discuss my numbers.

I had 2 bad lows on my first day on the pump; one after lunch and another after dinner.  Both were scary, for me, as they were 2.2 and 2.4 and came with no symptoms.I honestly think that I was just so excited/tired/hungry/stressed that everything was out of whack. I hope that's what it was, since I never get lows like that with no symptoms...

Things started to calm down over the rest of the week, although I spent a lot of the week running a little on the high side. I was up overnight, multiple times, so I spent a lot of my waking hours taking short naps in between eating & doing post-meal checks. Overall,  a pump start is definitely not an experience I'd care to repeat, but having gone through it I can say that I'm happy I put the work into fine-tuning my basal rates and carb ratios.

2 weeks in and I'm still feeling pretty good about being on a pump, so I'd say that's a good sign. There was always a small part of me that worried about the being-attached-to-a-device thing. I wondered whether having a visible sign of my diabetes clipped to my hip would start to weigh down on me and cause last year's burnout and depression to rear their ugly heads. If a pump was truly helping with my diabetes management, I know I could always turn to the wonderful doctors and medical professionals who helped me through it last time around, but quite honestly the while period was horrible and I wouldn't care to repeat it. The actual physical device has only been a minor annoyance when it comes to wearing dresses, but luckily that's it so far!

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