3
Sep

22 years

September 3rd makes me angry.

It's not intentional, but it's a problem. Maybe.

Have you noticed I'm not too thrilled about this year's dia-versary?

Last year when my diabetes turned 21 I picked a fight on twitter with a local Doctor-slash-media-darling and his followers who were commenting on a promotion by a fast-food restaurant (Dairy Queen, I think) who was donating a percentage of ice cream sales to JDRF.
This guy is a huge proponent of balanced plant-based diets and exercise, and is (it seems/if his book sales are any indication) a beloved member of the community in my city. I followed him on twitter because my Nancy is a fan of his work, and up until a year ago, I was as well.

On Sept the 3rd of 2014 I was waiting at work for some processing to run, I scrolled through my twitter feed and saw this comment. I saw red; my vision literally clouded over and I felt blind-sided by the rage that had built swiftly and with a vengeance. I was furious -- he was essentially saying that by choosing to purchase food products from a retailer who serves sugary snacks, despite this restaurant donating part of their proceeds to JDRF, the buyer was contributing to a diabetes epidemic.

I called him out, as well as some of his followers. I spent a lot of that day trying to explain to randos on the internet how hurtful and cruel their comments were.  I think that day was the first time I realized how difficult it is to express yourself in 140 characters or less, and I'm not sure I managed to convince anyone to change their minds on the issue.

Despite this, I remain convinced that my inability to clearly articulate my argument does not make me wrong.

This year I haven't gone on any internet-rampages; rather, I found my mood sitting somewhere in the "I dare you to fuck with me" realm.
I hate this. I hate diabetes. I hate how upsetting I find it and I hate how angry it sometimes makes me. I hate how there are days where I am so frustrated with trying to stay alive that I honestly and truly believe I might just give up, just lose the ability to continue to try, consequences be damned.

It crosses my mind every time I bolus for a large meal that unless I eat, I have likely just given a lethal dose of a medication. Sometimes this balancing act feels all but impossible.

 

None of this is coming out as I want it to, but that's about the norm as far as my diabetes-related-feelings go.

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.

 

1
May

Hey! Back off!

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No, rabbit, I will not share. Dex tabs are for humans only. Get your face out of there.

21
Apr

Phrasing

I don't know if all MDs in my area have recently undergone some sort of fantastic training re: the importance of words and phrasing, or if I've just been lucky to see doctors who are extremely adept at choosing words that do not place blame on the patient. I've seen two different (and new-ish) doctors In the last week, both of whom were careful to separate me from my diabetes in some parts of our discussions.

I asked the second doctor some questions about things that may come up a few years down the line, and her reply was that because of "the diabetes" I would be considered high-risk, and would therefore be transferred to a different physician.

Nowhere in that statement did she make me feel as though any of that statement depended in any way on my management of my diabetes.

I know this could come off in several ways. I don't think I'm describing it very well, but what I'm hoping to say is that she made me feel like I would not be the reason why I would need to see a high-risk clinic...diabetes was. I know she certainly wasn't trying to say that it doesn't matter how hard I try to manage my sugars; rather, I think she was telling me that just by virtue of having diabetes I will need to see a specialist, and that is not my fault. It is not the result of any action or inaction on my part.

Not "because of "YOUR" diabetes. Not "because of YOUR" sugars. Not because of this disease tied to me that I drag around 24/7. Not because of me, or anything that I did, or anything I will ever do.

Not because of anything I can control.

That, I think, is what feels so liberating - in the face of all of the things that I can control, that I should control, knowing that this, I can't, and it is not my fault.

13
Apr

Bargaining?

I sometimes find myself negotiating with myself to downplay the gravity of my diabetes care. "Oh, I've been waking up high all week? ...Yeah, but yesterday I tidied the main floor AND vacuumed. PLUS, I emptied the garbage for the whole house this week so that Boyfriend didn't have to, because on garbage night he was out at his mom's place fixing that crack in the drywall beside the kitchen counter, so he would have been too tired to do the garbage, soo......yeah. I should get a pass on the diabetes thing. I'm obviously too busy to retest overnight basals."

 

"I wore an infusion set for 5.5 days last week? Yeah, BUT the DCM at work (A manager who is, I think, 5 or 6 managerial levels up above my boss) came to our office with a rush request on a Friday afternoon, so I stayed suuuuuper late on a Friday. I was crazy-efficient though! I produced everything that they needed for their meeting on Sunday!"

 

Or, my favourite, "I wore an infusion set for 5 days again? Well, that's 5-days-ago-Melody's fault. She shouldn't have filled the reservoir with enough insulin to last 5 days. She should've only filled it with 3 days' worth."

 

 

 

Sometimes I wish I knew some other actual, real-life diabetics, so I could figure out whether this is a thing we all do. I feel as though if others do it too, that makes it less bad. I'm sure there's a word for that.

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.

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.

25
Dec

Merry Christmas!

& happy holidays :). No matter what you celebrate,  I hope your holidays are safe and happy.

17
Dec

Things I have learned: funerals

I learned this week that after the viewing, you will require a car to move from the funeral home to the burial site for a funeral. If you do not have a car, you will have a problem.

I also learned that there are good, kind people in the world. People who recognize a sad, slightly panicky, out-of-place girl who has never dealt with death as an adult. Never dealt with grief. People will see this anxious, forlorn girl and offer a lift to the burial so she's not stuck wandering a very large cemetery.

I learned that it's become automatic to turn my sensor alarms off and set my pump to vibrate before things like movies, shows, meetings, and, apparently, funerals. I don't remember doing it, but it was done.

Diabetes has been doing the usual. It's had its ups and downs this week, but somehow it feels like it matters less. I suppose that's fitting.

6
Nov

Ugggh.

These last few days have felt pretty miserable.

I've been super high for super long, and it's taking super-basals and super-boluses to even make a dent in it. I've been running a 180% temp basal for about six days, but unless I also supercharge my mealtime insulin (with SUPER EXTRA mealtime insulin), this happens:

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I feel almost constantly bloated. I am ALWAYS THIRSTY. I feel sloshy from all the water I'm drinking, and I've had a low, throbbing headache for about 3 days now.

Ketones haven't been an issue yet, which is lucky because usually I'll get things under control then stupidly think that I can eat, which  -- WHAM! -- causes more super-highs.

I have checked my sites. None of this is from an infusion set issue. That's about the only troubleshooting I've managed to do.

It's like this horrible stupid cycle.

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Round and round and round it goes...

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