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Disclosure

I am not a medical professional, I have never played one on TV, nor did I stay at a Holiday Inn Express last night.

Posts on this website simply convey the experiences of the author and are not intended to be taken as medical advice.

Talk about any changes you may be considering with your own medical team before changing your treatment regimen.

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Recent Posts

  • Void
  • Patients for Clinical Research
  • Cataracts are Depressing
  • Responding to the Response to the Re… Ah Crap, Just Read It
  • I Wasn’t Being Polite, Miss Manners

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Void

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

I just want some solitude. Really, that’s all I want right now.

And to stay in bed, to not have to get up, to not face today in the world. But what I really want is to be left alone and that definitely won’t happen if I don’t get out of bed. Who the eff am I kidding? It won’t happen anyway, not ever, not in a live-in care-giving environment.

This had become the nature of my life: frustration, anger, sadness and guilt of having these feelings.

But, as with all things, that to has passed only to be replaced with a void. Depression. A big spot of empty. That’s all I seem to remember, all I see coming. It is so hard to function in any reasonable manner. I see things I need to do and I just say no. That no gives me some miniscule control in this chaos that my life has become. It feels good for a second before I get guilty over being lazy, worthless, wiping out that moment of control. So, I do it again. And again. And again.

I have been a live-in care-giver for over three years now. Three years of no true place of my own, or privacy, or … But mom is still with us, those end-of-life and hospice discussions becoming distant memories, her quality of life is so much higher than it would be if I wasn’t here. But the guilt I feel is fresh in my mind. There are so many things that I ‘know’. Like  it’s normal for me to feel some resentment, anger at putting life on hold. No matter how much I love mom and am glad that I have been here, those emotions are there and bring guilt with them. Another thing in life that I have no control over.

It’s draining, it’s emptying, yet I need to stay in this. There is no other viable choice. No choice, no control, just trapped. Caught in a snare of my own making.

Enough hyperbole, my coping mechanisms aren’t working well any more and I’m starting to lose the ability to even try any new ones.

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Patients for Clinical Research

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

I’ve recently accepted a Community Leader position with a start-up, Patients for Clinical Research, whose goal is to is to make clinical research accessible to all who can benefit from or take part in the research process. Our mission statement:

Patients for Clinical Research seeks to create and implement programs to educate patients, patient groups, researchers, and medical providers on clinical research. Our mission is to make clinical research accessible to all who can benefit from or participate in the research process.

Our vision: To use digital technology to educate and enable everyone across the globe on how to access and participate in clinical research anywhere, anytime.

We are a team of patients who, with the support and assistance of a wide array of industry and research experts, have banded together to help pharma research put the human back into research into the conditions and diseases that impact the quality and quantity of human life.

We have no borders. Our only mission is to get all the players at the same table. Join us.

I will be contributing articles and other social media activities and compensated for these, however the opinions and words will be my own

We are just getting started so keep an eye out for the #pfcr twitter hashtag stay tuned!

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Cataracts are Depressing

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

A few weeks ago, I wrote about needing cataract surgery and the fear that I had about it. The surgeries went well and I am the proud owner of new intraocular lenses. This is a complication of diabetes, so often considered a failure, so needing the surgery was depressing.

After I had the first one done, there was a two-week wait before the second eye would be operated on so I was wearing my glasses with only one lens so I could see. I found myself cleaning my glasses, often trying to clean both lenses… And now I catch myself trying to adjust my non-existent glasses. I am such a creature of habit.

The biggest thing I have noticed is how bad my vision had become. Not unfocused, but how dark everything was appearing to me. The restroom at mom’s, the one I have used for the last 3 years was always a pleasant, light beige color not the bright white I see now. Lamps that always appeared yellow were actually white.

I’ve turned all the computer monitors I use down by about 30%, full sunlight is painfully bright as are some room lights.

I had no idea that I was simply not seeing fully. No clue that the world was dimmer, substantially dimmer, than it really was.

So I began to wonder, could the diminished light be playing into the several serious bouts of depression I’ve experienced the last couple of years?

Could cataracts literally be depressing?

I wonder what will happen over the next few months now that the days are getting longer and it won’t be long before the boys are back again… err… sorry 80′s flashback.

Seriously though, I do wonder if the increased light I am able to actually see will have a positive effect on my depression. The problem for me with any type of treatment for depression is how long it takes to see a change. I always doubt the change, not believing that I actually feel better. Not believing that I will ever be able to feel better.

That last sentence is depression talking.

And depression lies.

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Responding to the Response About the Re.. Ah Crap, Just Read It

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Last week’s DOC response to Miss Manners advice to a diabetic traveler was often emotional but consistently said that her advice was wrong and hurtful. Then there were some very thoughtful responses to that DOC response itself from folks like Chris, SaraKari calling out those of us who had added some name calling and vulgarity to the conversation, myself included.

I tried to write a reasonable response to that first article, trying to explain the embarrassment I felt at times because of my condition and because of beliefs such as hers, but my closing paragraph said:

Biases and bigotries are overcome with education, maybe you should educate yourself a little before telling someone to be embarrassed by their health condition.  And while you are working on that education, please take the time to go fuck yourself.

A valid argument can be made that the last sentence wiped out any value of the rest of that post and honestly, I tend to agree with that. That thought was actually in my head as that sentence was on the screen before me. I had tried to explain how I had felt at those times and I really having trouble describing it, so I started to think about how I wanted to reply at times and the last sentence just appeared.

Continue reading Responding to the Response to the Re… Ah Crap, Just Read It…

I Wasn't Being Polite, Miss Manners

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Miss Manners, in a brilliant failure of advice, tells a traveler that he would be very impolite to test his glucose in public saying

Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others.

Diagnosed with diabetes in 1970, I used to do such ‘unaesthetic’ activities, things like glucose testing and injections, in private. I’d tell myself that it was because I didn’t want to upset other patrons. Telling myself I was simply being polite, being considerate.

It wasn’t politeness.

It was embarrassment. Embarrassment about being different, embarrassment that I had to do those things.

Embarrassed by a health condition that I didn’t ask for, one that has been a part of my life for nearly 45 years. My friends and loved ones are also affected by this disease. They worry about me. Are they embarrassed as well? That is the question a child will ask himself, one that will haunt their thoughts.

Embarrassment.

Stigma.

Diabetes is a stigmatized condition, one where the patient is often blamed for the condition. There is a bias against people with various disabilities, one that can have a very deleterious effect. Over time, that bias can wreak as much harm on a person as the disease itself.

Miss Manners, your advice reinforces that stigma, validates the bias, legitimizes the bigotry. Your advice tells that person, and anyone reading it, that they should be ashamed of themselves for doing what they need to stay healthy where someone might ‘see’.

What’s next? Asthma inhalers? Service animals? Will we have our own drinking fountains?

I no longer test in private. I stopped doing that when I stopped being embarrassed for being diabetic. When I stopped being embarrassed for being what I was.

I am a person.

I am a person with diabetes.  The part that the healthy see, those blood tests and injections, are such a small part of living well with diabetes. Yet those little things are the focus of the stigma, those things that are ‘visible’ to those of the health-privileged class.

Does it make you so uncomfortable that my health requires me to do these things that you have to deride me? Is your discomfort is my fault?

I will not allow myself to feel less than whole again by someone’s biased, no bigoted, opinion.

Biases and bigotries are overcome with education, maybe you should educate yourself a little before telling someone to be embarrassed by their health condition.  And while you are working on that education, please take the time to go fuck yourself.

© 2014 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com