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.

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...

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.

 

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.

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