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.

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.

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.

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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