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."

25
Jun

C'mon, Glu...

I have a Glu account. I subscribe to their daily surveys, so each morning I receive a "Glu Staff: Question of the Day" survey.

This morning's survey question looked like this:

image

Glu Survey of the day on June 23, 2015

I don't  always complete the surveys that appear in my inbox every morning, but I do always read the emails. If I feel as though I have something to contribute (or I'm just curious about the results of that particular question!), I will log in and check it out. This morning's survey definitely did not sit well with me.

Of all of the ways to start my morning, contemplating which complication produces the most of that gut-wrenching chills-you-to-the-bone fear is NOT my my favourite.

12
Jun

A new chapter

Tomorrow afternoon something big is happening. Huge, even. A monumental and serendipitous event is taking place.  Tomorrow my best friend in the world is taking a huge step with the love of her life.

 

Tomorrow, my favourite Miss Nancy becomes a Mrs.

 

I've always admired the certainty with which Nancy faces her future. She's known right from the start what she wants for her life, and in those goals she's never wavered.

 

I am so excited to be there to witness as she starts this next chapter with a kind, clever, funny, perfect-for-her man by her side <3.

5
Jun

News from Medtronic: the Minimed Connect

I saw something cool on my Facebook feed tonight: Minimed Connect will be available in the US sometime in the Fall of 2015.

 

What is Minimed Connect? It's an uploader that sends pump and sensor info to a smartphone, which then reads it via the smartphone app and lets you view your pump info via phone. It doesn't allow you to control  your pump, but it does let you set a "text message threshold" which will send out a text to friends/family/loved ones if your sensor glucose levels are too high or too low.

The uploader also sends your sensor data to your Carelink Personal account every 24 hours, so those reports will always be up-to-date in case you or your doctor want to log in and check out that info.

I feel like this will help out with the "pump alarms aren't loud enough" problem. It will definitely also be nice to have Carelink data updated automatically, rather than the current system that requires that the user manually upload their data (in my case, frantically the night before every endo appointment :P).

 

The article (and the ensuing comments) mention that the release is in the US only, and will cost around $200. They do not expect the device to be covered by any insurance carriers.

 

The comments also mention that they have no info about a Canadian release for now. I hope they provide an update about the Canadian release sometime soon!

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.

 

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