Who am I.

May 22, 2016

The Monday after my last post I felt incredibly supported by the epatient community (and many of the providers that make up that community too). I felt a bit of a high thinking – Yes! This is what advocacy is about! I’m not crazy! Other people feel this too! This means something!

Then the next day, my emotions took a marked turn and I started to feel bitter or just more frustrated. The patients get it. But the providers don’t.

I went to an appointment and walked out with the express feeling that I was being asked to sacrifice more of myself, my time, my energy.  After, I went to the pharmacy, where because CVS bought Target Pharmacy – CVS which I expressly left because of their horrible service – my prescription was not filled and my insurance was messed up.  And all I could think is that there is no more of me to give. There is nothing left of me. I have given it all to health and healthcare and been sucked into the maelstrom of tests and medicines and procedures, doctors and therapists, industry and politics. I have given everything and I have no idea who I am.

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To All My Providers

May 13, 2016

Recently I have written a lot of long missives to separate providers and the administration of the health center where they practice regarding everything from emails to insurance coverage to health issues to theories of patient engagement and care. For weeks I’ve been debating whether to simultaneously email my entire care team and tonight felt that I was ready to do so.

This is a message to all my providers:

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What It’s Like

May 11, 2016

The following is a companion post to A Brief Tantrum with the theme of what it’s like to live the #CronicLife (but with no swearing this time).

I was trying to explain what it’s like to be me to my therapist when saying that I wish my providers would go the extra mile. I’ve been accused of having high expectations. I think the truth is I settle for low expectations but am angry because I know they can do more. I don’t expect anything that I believe someone isn’t able to attain. I have high expectations because I know they can be met. But again, I settle for far less than that. That’s all I get.

I’m just the bad guy for wanting more than they think they can give. They can’t see what it’s like for me though.

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The Real Access Issues

May 6, 2016

Recently, the diabetes online community has been in a bit of an uproar over United Healthcare’s decision to name the Medtronic insulin pump as the preferred pump for all on its plan.  #MyPumpMyChoice and #DiabetesAccessMatters are added to every tweet on the issue as people debate choice in health care, health care costs, and access to healthcare in general (though mostly around tech – i.e. insulin pumps).

For some time now I have been rather frustrated with the larger issues of access, the ones that don’t get talked about as much and don’t have popular hashtags, the ones that aren’t sexy but are often more critical.  And those include basics like access to dental care and eye care and mental health care – (and I know this will piss many off) but what I think are the real access issues.

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Why I Don’t Wear a Pump

May 6, 2016

Whenever people see me taking shots with a trusty syringe straight from my bottle of insulin, I get stares. Not just from those without diabetes, but many from those with diabetes. Everyone wants to know, why don’t I use an insulin pump?

The easy answer is expense. The real answer is it’s not safe for me.

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I Need to Tell You I’m Having a Panic Attack

April 29, 2016

…But I’m not capable of explaining to you in this moment what is going on in my mind and body.

image

Thus my question tonight, how do you help someone know you are experiencing a panic attack or in the middle of a PTSD attack when you most need help?

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The 4/8 Rule

April 12, 2016

4 hours a day
8 hours a week.

The 4/8 rule.

I’m not sure exactly when I came up with the 4/8 rule but it had to be sometime after the watch incident. After that I decided it was probably best if I didn’t stay outside my apartment for more than 4 hours in one day or 8 hours per week. It was and is a way to protect myself but it’s also meant not living a full life.

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