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

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.

22
Jul

CGM Start

CGM start day was... interesting. I got up early to do a set change before breakfast, and since it was an important day, naturally my pump kept giving me "NO DELIVERY" alarms. Every time. I don't know what caused it, but something about the set was blocking the tubing. Infusion sets are expensive, so I really wanted to try to make this one work. I tried reattaching the plunger to the reservoir and manually pushing insulin through the set -- no luck there. I swapped out the new reservoir for the old one, as it still had a few units in it -- & this time, manually pushing insulin through the set worked. I reattach the new reservoir, prime the tubing, and this time it all works just fine.

But wait! It gets better!

I got to the hospital and met with my nurse, the Medtronic nurse, and John (someone else who sees the same endo as I do), and we sat down in a conference room to start the training. My nurse showed us, using a "training" sensor and a pillow shaped like an abdomen, how to do the full sensor start.

We got the chance to use our own "training" sensors to do a practice run first, and I'm glad we did. My sensor jammed up in my serter and failed to insert. It turns out the tape got caught and was preventing it from inserting the sensor :(!

They gave me a new practice sensor, and the second time went off without a hitch, so John and I prepared to insert our first *real* sensors. I chose to put mine on my back, still above the belt line but very far from my abdomen. I know it would have been easier to do it where I could easily see what I was doing, but I also know that having something in my stomach for 6 days would drive me crazy.

I picked a spot, inserted my sensor, waited 5 seconds, and removed the serter. Voila! It was in!

Before even removing the needle, I twisted to pull the top of my skirt down a bit so I could see the sensor clearly.. aaaaand in the process, I rip out my infusion set.

& to make things even better?

HUGE BLOODY MESS.
(...ew)

So that was fun - being the person who's bleeding from her butt (the top of my butt....but still) while everyone waits for her to catch up. Awesome.

I took a second to remove the sensor needle and apply the overtape at this point. I also used some Skin Prep around the sensor at that time, as I need it to keep things stuck (showers tend to dislodge infusion sets when I don't use Skin Prep 🙁 ), and the Medtronic nurse told me that if I used the Skin Prep prior to inserting the sensor, the sensor would get gummed up by the Skin Prep and might not work properly. I had no idea!

She said it's not a problem to use it as long as the Skin Prep (or any other product that makes skin sticker) is applied around the sensor after it's already in the skin. It felt extremely awkward to try to wipe under the sensor-tape with a Skin Prep swab, but despite that it still seemed to work ok.

My nurse brought me a spare infusion set, so I just swapped it out for a new one. My reservoir was still working and thankfully didn't give me any more "no delivery" alarms...

Medtronic sensors need about 5 minutes for the sensor to "wet" after they're inserted into the skin, so I spent that time setting up my new infusion set. After that, It was time to attach the transmitter and tape the whole thing down.

Overall, I guess the whole thing went pretty well. A few relatively minor setbacks (a test sensor that jammed, a yanked-out infusion set...) did occur, but honestly if I'm ever going to have a sensor-insertion-experience that's filled with drama and unexpected events, it's prbably best that it happened at a hospital :P.

I've since inserted one new sensor, which went fairly smoothly. I can't say I'm comfortable with the process yet, but hopefully that part will come with time.

9
Jul

bahahaha...

I passed this in the stairwell:

image

This is my hospital's method for dealing with a coffee spill on the floor. It's technically an accurate sign, I guess...

9
Jul

CGM Day!

Today is CGM day! I'm on my way in to the hospital for my CGM training with my CDE, the nurse from Medtronic who does pump and CGM trainings, and another patient who sees his endo at the same clinic as I do (they sometimes do pump- and CGM-trainings in pairs).

My list of worries includes (but is SO not limited to), in no particular order:
- It will bleed for ever and I'll have to remove the sensor
- They will want me to insert the sensor on my stomach (seems likely), which will hurt (because stomach sites always hurt)
- It will continue to hurt for the life of the sensor
- I will dislike cgm because my first one started with 6 days of discomfort
- I will screw something up with the insertion
- I'll forget something and look like a tool (but I watched all of the Enlite training videos! I swear I did!)
- When it hurts, I will get all teary. I do not want to cry.

...and that's just the beginning. I know that most of these things are either unlikely (3+ minutes of bleeding) or not as bad as I imagine them to be (6 days of discomfort), but knowing that doesn't change my worry level.

Either way, in a few hours I will be hooked up to my cgm. Wish me luck!

8
May

Meter Accuracy Blood test

This morning, I met an interesting woman.

I was at the lab in the outpatient hospital where I see my endocrinologist, waiting to get a fasting BG reading in order to check the accuracy of my meter when compared to the lab test.  I got there early, a few minutes before the lab opened, and joined others standing in line waiting for the clinic to open. All hungry people (early-morning people are always the ones getting fasting bloodwork!), avoiding eye contact and staring at their feet as they shuffle forward in line to hand in their forms at the counter before securing a seat in the waiting room.

There was a woman who was....chatty. She smiled at people, held doors open, and seemed like she was looking for a conversation. As I approached the back of the line she was sitting along the wall on a bench. Seeing the growing crowd of people made her realize that she should probably rejoin the actual line (so as not to lose her spot, I suppose), and I gave her a half-smile to indicate that I didn't care that she jumped ahead of me in line (she had, after all, been waiting longer, and I'm not too bothered if someone needs to sit instead of standing).

Fast-forward to the seated part: forms have been turned in at the desk, and I'm waiting for the voice to call my name for the blood draw. I pull out my meter to test and...high. again. Not HIGH high, but higher than I want to be. Take out my trusty HumaPen, measure out a correction, and inject.

Once the needle has been safely removed from my abdomen, I hear a voice piping up from 2 seats down: "Oh, do you have diabetes?"

The woman from the line. "Yes, I do."
I give her another half-smile. I really don't want to talk... I'm hungry, and a little grumpy that I woke up high and was still high. I start rummaging around in my purse for my phone, wondering if she'll take the hint and stop talking to me if I'm clearly focused on the device.

"I do too. Are you on insulin? Type 1?"

"Yes, I am." his time I put the phone down, and turn so I can properly face her. "You too?"

"No," she replies. "Type 2, for 30 years, but I'm not on insulin yet."

We started to chat about diabetes - the ups and downs (hah! that never gets old), what we do to manage it, all sorts of stuff. At one point, I mentioned how if she does go on insulin in the future, she can probably work with her doctor to find one that works for her - after all, 30 years ago the same types of insulin (long-acting, fast-acting, etc) might not have been available. I told her about how the insulin I was on and the amounts I took are very different now than they were when I was diagnosed.

She asks how long I've been on insulin: "21 years, this year."
Her eyes widen a little bit.
How old was I when I was diagnosed? "4."

She pauses. Her expression softens a bit. "...wow."

I have to admit, I wasn't really expecting that. For a second she actually looked like she didn't know what to say. She thinks for a moment, then tells me "Kudos to you. It can't have been easy to deal with that as a child. You lose so much, having to worry about diabetes growing up... just, jood job."

That one was unexpected. I don't think I've ever had someone tell me, just straight-up say "good job for making it through." We continued chatting for a bit - I countered by thanking her and telling her she too must have encountered health struggles over the last 3 decades, but the fact that she was still here and still getting her yearly blood work means that she's doing  exactly what I do: just trying to stay healthy.

She got called in for her bloodwork first, then I did. We parted ways, wishing each other a nice day and agreeing that it had been nice to chat.

I liked chatting with that lady. It sometimes can be nice to chat with someone who experiences similar daily frustrations about food, BG testing, and medications -- and it certainly made waiting in line for bloodwork much more interesting!

28
Mar

Hospital equipment

I just found a pic that I took at my last endo appointment. The name on the scale made me chuckle...

The view from the blood-pressure-cuff-chair

 

 

 

 

Label makes me lol

Health-O-Meter!

13
Nov

Last week / oops...

Last week I had a....an incident? I'm not sure if that's the right thing to call it. A series of unfortunate mistakes and circumstances that culmitated in a miserable night in the hospital? Let me explain...

I got to work and made breakfast. I hate eating when I first wake up -  I always feel like my stomach hasn't woken up yet when I first get up, so I wait until I get to work before I chow down on the classic bagel/fruit combo that I so love. This morning was a bit different though - there were URGENT projects and data revisions that had to be RUSHED because of how vital they were to a project that I can't now remember, less than a week later. I gave my Humalog for my food, went to the kitchen at work to toast my bagel & slather it with peanut butter,  then brought it back to my office where I started working.

I got to my desk, sighed at the urgency of the requests in my inbox,  and cheerfully tackled the project at the top of the pile. I worked like crazy until about 1:30pm, when I realized that not only was I about an hour later than usual for lunch, but I had skipped my 2hr post-meal check! Whoops!

Normally I do that bg check almost every morning, along with the rest (check, bolus, food), with one small exception... iiiii normally give my levemir after I eat breakfast.  This particular morning I just got so distracted that...I just didn't.

So: damage control, as at 1:30 I was 18 and probably climbing. I corrected.  I put off eating. I carefully calculated correct boluses for the food that I did eat. I corrected again. ...and again. ....aaaaand again.

By 10pm I was 26. I corrected rage-bolused with 7 (more) units of humalog, and checked again 30 or 40 minutes later, which is when I saw that I has climbed to 28. I know that 40 minutes isn't long enough for the humalog to peak, but it should have at least started working at that point. At that point I was exhausted and slightly hysterical - I had been fighting off a pounding headache, dry mouth, and a churning stomach for around 10 hours by then, so I called my doctor's office and requested that the on-call endo call me back. A few minutes later I had a wonderfully calm and reassuring-sounding doctor on the phone, who listened to my very detailed account of everything I had eaten or injected over the course of the day. My play-by-play of my terrible sugars all day ended with me asking him what would be the safest way to correct this without overdoing it.*

He pretty much gave me 2 options : he said that if I had someone I could call so I wasn't alone overnight, he would recommend that I give extra levemir and humalog, and set alarms to wake me up periodically overnight so I could check every few hours. He emphasized that that wouldn't be the best option though, and said that as I live by myself and wouldn't have anyone close by if I needed help, he would recommend that I get myself to an ER.

so..off to the ER. I was reluctant to go, but the fact that when I arrived I was sitting at 31.7 helped to convince me that it had been a good idea. They were wonderful & gave me IV fluids until my sugars stabilized at 4am, then sent me home. I called my boss (work phone! Not at home!) and left a slightly rambling voicemail about how I felt like a sack of crap, then went to bed and slept for 12 hours, waking only to give my 8:30am levemir.

*I did not have any ketostix at the time. The day after, I went to the pharmacy & picked some up. My next high bg will be the first time I check for ketones in ...probably over 12 years...

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