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The Not So Wordless Wednesday

May 9, 2012 — Scott

Last week I posted about it kinda being a big deal that I took pictures on my trip. It was kind of a big deal because I never take pictures on trips, unless the kids were there and then it is pictures of them. It’s amazing how few pictures of me there actually are. I had tossed the camera in my bag and was taking pics before I even realized what I was doing. I hadn’t even really thought about taking pictures, let alone the implications.

Those pictures imply a lot of things. Most importantly for me was that they implied that I wanted to remember things. At least I thought that was the most important thing.

Then I visited Morpheus.

I sometimes think Morpheus takes an unnatural pleasure in showing me that what I think is a big deal is setting right on top of a really big deal. In this case the future.

She asked me why I thought it was a big deal. I said I want to remember things. Then she busted it all out reminding me that when I do, it will be in the future. Captain Obvious, right? Pretty much until you add in the fact that I believed for so long I was already supposed to be dead. That part makes thinking, and maybe accepting, that I will have a future a pretty big deal.

Long ago, I used to take a lot of photographs. Back in the days of real film and darkrooms. Developing my own film. Using a 35mm camera that had exactly zero automatic settings, doing it all manually. It took me a while to get the hang of electronic cameras, I have to be patient enough to let them do their job. I was used to point, focus, click… seeing the photo you wanted before it happened. If you saw it, you missed it. Now it’s point, hold the button until the camera decides it’s ready and hope it auto-focused on the right thing. I suppose it would be better if I used an actual DSLR… maybe someday. I still have my Canon lenses and camera bodies from 30 years ago stored in my old camera bag.

On this trip, most of the pictures are what I would call somewhat “sterile”. Not a lot of people in them, mostly just building shots of the old missions in San Antonio. ** As an aside. I was honestly much more impressed with the missions than I was with the Alamo. There’s not much left of the Alamo and they wouldn’t even let you take pictures inside, unlike the missions. I did have a little fun trying to play with the lighting to get a decent pic of some of the chapels.

But enough dodging the topic at hand. The future. Back in the day, I never thought I’d have one… that was a lot of days ago and here I am. So maybe I’ve started accepting that part of the equation, that I did survive. That acceptance allows me to see another piece of the puzzle. The future.

I’m not thinking of the future as the thing that we diabetics seem to think about: complications. It’s more of tenuous grasp on actually participating in my future instead of just coasting along. Being more a part of the lives of my kids, family, friends, Romans, countrymen… opps wrong list

Then Morpheus said that she was more impressed with the photo I had chosen to post last week, that one of myself. The fact that I had even taken it, let alone shared it was a little more profound than I had really even thought about. I took it on a whim & kinda liked it and didn’t place much importance in it except as a profile pic.

The profound part was that it was a photo of me in the world. A world that I have started to accept that I will have a future in.

PS: Morpheus also said she was curious who was going to get to see the pictures… well the answer to that is YOU! Check out the Flickr stream!

Posted in Advocacy, challenges, dblog diabetes support, depression, Mental Health, mhsm, support. Tags: advocacy, Depression, diabetes, mental health, self worth, type 1. 7 Comments »

On Death and… Living?

April 23, 2012 — Scott

I haven’t written lately about my sessions with Morpheus because these last few weeks have been pretty rough for me. I’ve gone from having an understanding of how my Why Bother attitude had developed to understanding that I wasn’t feeling guilt because I had survived all these years and on thru admitting that I didn’t like being alone and then how admitting that had given me a sense of loss.

That was my last update and I was really feeling very vulnerable after writing it, so I took a break. Even a break from really working on therapy and trying to make progress, still going, but not doing much otherwise. The reason for this was that I was pushing back awfully hard on one of the things I needed to work on, to do. That I needed to start working on not being so isolated.

At my last session, I actually argued with Morpheus, something I really hadn’t done before. I kept pushing back harder and harder. I was sitting there for a while debating with myself whether I would be back or not. It went to the point where I pulled my “e-patient” card and said “That’s enough for tonight”.

I have been feeling really stagnated at therapy lately. This isolation thing has been my way for most of my life. I just couldn’t seem to make myself be social, be it real world social or simply on-line social. It seems that Why Bother had kicked Will Bother in junk and locked him in the basement. Why just kept saying “Dude, this is scary. I mean you’re supposed to be dead anyway. Jeebus, why bother?”

I keep just seeing more ways to fail. More ways to be ashamed. More ways to prove to myself that “No, you’re not worth it”.

I asked Morpheus why I was still coming to these sessions. Why was it so hard for me to be social and just live like everyone else.

She said that I was still coming because I had basically chosen to change. I didn’t like who I was and I still don’t seem to.

She said something down toward the end of the session that made me think. She said that I had been living with death as companion for so long that I was much more comfortable living with the isolation of death and just existing than I was having relationships and actually living. Death doesn’t scare me but living does.

After my session with Morpheus, I was very serious when I left. Not angry, not sad just serious. Serious enough that I actually went out Saturday nite and had a couple of beers with an old friend. Surprisingly, I actually enjoyed my visit even though I kept my “seriousness” on top, not letting enjoyment through, still clinging to the thought that I am not supposed to enjoy things. I faced one of my fears and went out only to have Why rear up to quash it.

This is so goddamn frustrating. I even feel like I’m failing at therapy. I have plenty of excuses (a couple of them even valid) not to go back this week. My stress level is pretty much off the charts and even thinking about going this week makes it worse. I hate this shit. Seriously.

Posted in Advocacy, challenges, dblog diabetes support, depression, isolation, mhsm. Tags: advocacy, Depression, dsma, mhsm, Social media. 14 Comments »

Angry Loss

March 27, 2012 — Scott

I’ve actually been experiencing quite a feeling of loss since I wrote Truth and Missing Pieces Not Included. It is like I have been grieving for the loss of being safe in my loneliness. Once again (have I mentioned how hard therapy is? If not, it is an effin’ lot of work), I am forced to look at something about myself that isn’t necessarily easy to discuss or change. Yet here I am discussing it.

BTW, to those who commented on Missing Pieces Not Included, I apologize for not replying as I have been doing for most of these posts. That was a hard post to write and still feels pretty raw, for lack of a better word. Why do I have the feeling I’m about to pour salt in?

Before I found the DOC, I was completely isolated in my diabetes. I didn’t even realize that I needed support until I found out it existed. That is how self-reliant I was forced to become. Well, the past few months of posts should show how well that worked out for me.

Interacting and forming relationships in the online community has been relatively easy for me, tho I still tend to be pretty reserved about myself. Those of you that have met me in real life, you have also gotten a pretty guarded view of me. I often have this “public” face of that kid that smiles whenever diabetes is mentioned that I wrote about in One For The Parents. The recent posts here have opened up a lot of things that are going on in my head, but I don’t think that these things are going part of my daily conversations with people.

I am now at a point where I need to step out of my isolation, but I’m scared to do it. I don’t know how, I don’t think I ever learned. Or maybe cared enough to learn would be a better way to put it. It’s very stressful for me, I am so anxious writing this that my chest physically hurts and there is a surge of adrenaline coursing through my body.

Besides all this, other circumstances in my life make things even more difficult at times. I can’t remember the last time I had a good nights sleep. Even though I am bemoaning that I don’t like being alone, there is no way that I can just have a nice quiet relaxing day at home alone. It’s tiring, exhausting at times and I’m sure that it is playing into my current emotional state of sadness/anger/depression (yes, sadness and depression are different things and feel differently, at least to me). At the same time, I’m grateful that I am able to do this other thing. Conflicted, you think?

I suppose I knew there would be points like this. Ones where I feel worse than I did when I started. I’ve really great friends online try to engage me, but I just haven’t felt very engaging lately. I’m not even sure why I am writing this, the more I write the angrier I get. Guess I’ve found another thing to be angry at myself for. Yet, I know it’s really not my fault, it’s just the result of circumstances. Circumstances that are beyond my control.

But I think I should be able to control my response to those circumstances. I have been, but it has been in a very isolated fashion. I’m trying to learn new, healthier coping strategies. The old ones aren’t going down without a fight though. I’m so tired now I wonder if I can see this thing through. I swear if anyone posts “You can do it!”, I will kick a puppy. This is exhausting and I am just about worn smooth.

Posted in Advocacy, challenges, dblog diabetes support, depression, HCSM, isolation. Tags: advocacy, Depression, diabetes, mental health, Social media, type 1. 16 Comments »

Diabetes Advocates Offer Assistance in Accurate Reporting in the Media

March 27, 2012 — Scott

”We want to help get it right,” states diabetes advocacy group

Tuesday, March 27, 2012 (BERKELEY, CA) – Did you know there are more than five different types of diabetes? If your knowledge of diabetes is defined by what you hear and see on the news or in movies then you probably don’t. Diabetes Advocates, a nonprofit program made up of influential members of the diabetes community has launched a media outreach campaign, designed to assist the media on all things diabetes.

Kelly Kunik, a member of Diabetes Advocates, stated: “Today is Diabetes Alert Day in the US and we are trying to stress to all media sources that more due diligence is required on everyone’s part when reporting on diabetes. We want to help all sources ‘get it right’ but also stress the importance of explaining the differences among ‘all things’ diabetes.”

Despite the fact that media outlets are reporting on diabetes more than ever, the condition is still widely misrepresented and portrayed as only one disease, when in actuality, diabetes is made up of several different diseases (type 1, type 1.5 LADA, and type 2 being the most predominantly confused). By emailing the organization at media@diabetesadvocates.org, reporters can quickly fact check, get suggestions and have a real-time conversation with the Diabetes Advocates to ensure the accuracy of their articles. The Diabetes Advocates can also serve as sources for reporters.

With representation from the Screen Actors Guild (SAG), American Federation of Television and Radio Artists (AFTRA) and Actor’s Equity (AEA) within the organization, the Diabetes Advocates can also serve as information sources to entertainment outlets. Entertainment outlets looking for information on diabetes can email the group as well.

“Our goal is to stop being reactive and start being proactive,” said Kunik. “When a story with incorrect information is published, the damage is done. By making ourselves available to media and entertainment outlets, we are seeking to be part of a solution.”

ABOUT DIABETES ADVOCATES

Diabetes Advocates is a not-for-profit program run by the Diabetes Hands Foundation. The program combines the resources of its members to do activities to better educate the public about all aspects concerning diabetes. For more details, visit: www.diabetesadvocates.org.

# # # # #

Contact:
Kelly Kunik
media@diabetesadvocates.org

** Editor’s note: Every time there is an article, a portrayal, a comment about diabetes that is incorrect it simply reinforces and perpetuates the myths about diabetes such as “Your parents fed you too much sugar”, You’re fat and lazy”, and “You did this to yourself” just to name a few. Diabetes is the only non-communicable disease where the patient is blamed for their condition. The physical and financial toll of diabetes is hard enough without having extra emotional stress placed upon us by those stereotypes and myths. Please utilize us to help you get the story straight. — Scott Strange, Type 1 diabetic since 1970

Posted in Advocacy, diabetes, Media. Tags: advocacy, diabetes, media, Social media. No Comments »

Missing Pieces Not Included

March 22, 2012 — Scott

** This one is tough to write, I may close comments to it… we’ll see, it cuts pretty close to home

After last week’s session with Morpheus, I was pretty upset with her. Misplaced, I’m know, but she made me realize something about myself that is very true. And it’s one of the “biggies” or so it seems to me.

I’m lonely.

It’s something that I’ve done to myself, a way of protecting myself much like my “why bother” attitude. Actually, it’s probably a result of that attitude. Why bother having friendships or relationships when I’m already supposed to be dead? But there are a multitude of other things that go along with admitting that fact. Actually, “admitting” is the wrong term, “addressing” that fact would be a better way of putting it.

Addressing it means that I need to try and rekindle some old friendships, enhance some existing ones and who knows, maybe even start some new ones. Setting myself out there as just another guy, warts and all, who is worth being friends with. ** You have no idea how hard it was to write that.

Realizing that I’m lonely is hard to deal with. Even harder is to admit that I do. not. like. it. It’s like stripping away the last layer of my defenses against the evil hordes of real life.

How much of the public face I show the rest of the world is real and how much of that real me will I allow myself to see? How much of what is truly me on the inside has never seen the light of day? Smothered like a sapling in a forest just trying to find a glimmer of sunlight? Do “I” even really exist yet or am “I” still being machined down this assembly line of therapy?

And that my be the crux of the whole damn thing, my image of “self” has been so damaged, so unflattering that it’s hard to see the real me. In fact, I may never have seen me. As the layers of guilt, shame, self-doubt, self-hate have been getting stripped away (and keep trying to claw their way back in) I wonder who the true me is. I have to find that true me and it’s hard to do.

And it’s even harder to admit is that it’s worth doing. That, you see, requires me to admit that I’m worth doing it for. To admit that I have worth. Not only to others; friends, family, loved ones but to myself.

I have worth. Now’s there’s some words I never really thought about typing.

Today’s snarky comment: There are days I wish my inner muse would kick me to the fucking curb.

Posted in Advocacy, challenges, dblog, depression, family, HCSM, isolation, support. Tags: advocacy, Depression, diabetes, mental health, self worth, Social media. 13 Comments »

Truth

March 19, 2012 — Scott

** yea, I’ll probably say too much this time. Please read the lyrics from the song Truth by Seether before proceeding…

Part of my struggle now is trying to set realistic expectation on what I am able to accomplish here, on my blog, in social media. The fact is that there are a number of phenomenal individuals who are able to do social media advocacy work full-time. It’s not realistic for me to expect to be able to compete with that, even though that is very much the arena I would like to participate in.

I feel some, OK a lot, of responsibility to share what a lifetime with a chronic condition can do to an individual when true support is not available. So I’ll continue to do that here as best I can with care-taking, kids, work, life.

Recently I’ve really been struggling with what I want to do, indeed how I feel about myself and my place the world. Apply those song lyrics from Seether to an internal struggle within myself, between Why and Will. A struggle where I’m beginning to see how I let myself down and how that was inevitable and unfortunately normal given my circumstances.

Though I’m closer to wrong
I’m no further from right

I’m closer to understanding what is “wrong” so to speak and I’m starting to understand what may be my “right”. Part of what is wrong is isolation. Not so much being isolated in diabetes any longer, but being isolated now. Morpheus always seems surprised that I keep showing up but I think what is happening is that is one of my very few points of human contact. With most of my closest friends living over an hour away and just not being able to really do whatever I want, it has been very easy to withdraw and very difficult to partake.

One of the things that Morpheus pointed out this past week was that most of the things I do to relax are solitary, isolated, lonely. Movies, TV, reading blogs, computer games…

The deception you show is your own parasite
Just a word of advice you can heed if you like
And now I’m convinced on the inside that something’s wrong with me
Convinced on the inside you’re so much more than me

I’m starting to think that I might be more than me. And maybe I will start to be if I can learn to partake once again.

Posted in Advocacy, challenges, dblog, depression, HCSM, isolation, support. Tags: advocacy, Depression, diabetes, mental health, Social media. 3 Comments »

Exposing My Diabetes

March 15, 2012 — Scott

This months DSMA blog carnival topic is

Does your employer/school/friends know you have diabetes? Why or why not?

I never reveal my diabetes during a job interview, though I suppose with this whole diabetes blog thing, it is a moot point now. Once I’m on the job it is a different story. I always let the people I work with and especially those I might travel with now and again that I am diabetic. I always tell my friends as well.

The reason for this is quite simple and totally for my own benefit. The more people who know I’m diabetic, the better my chances of survival when something goes wrong. And eventually something will go wrong.

** This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/march-dsma-blog-carnival-2/

Posted in Advocacy, diabetes, HCSM, support, work. Tags: advocacy, diabetes, friends, school, work. 4 Comments »

Changes

March 9, 2012 — Scott

Wednesday nights at 9pm Eastern is the weekly Diabetes Social Media Advocacy twitter chat (#dsma). This week’s (3/7/2012) topic was about laughter and diabetes, and honestly it was a pretty damn funny chat!

One tweet caught my eye though during the closing remarks. I remembered reading it on my drive into work the next morning and it went something along the lines of

we shouldn’t allow diabetes to change us

While I can certainly understand the sentiment, I’m not sure that is a realistic, let alone fair, request for the vast majority of us.

** I’m speaking here as a Type 1 diabetic who has been changed by having diabetes, so my view may be a bit jaded, tho still humbly correct.

With the constant demands placed upon us by this disease, we must change in order to adapt to the incredible stresses placed upon us. Those around us will be changed as well and I think this change should be taken as part of the package. In fact, this would apply to any chronic condition.

If we don’t acknowledge the changes that are forced upon us, how will be we able to truly accept what diabetes is in relation to our life? I wonder if those of us struggling with the turmoil that a life long chronic condition brings would view that statement as being in the same vein as “complications, eh? guess you didn’t take good enough care, now did you?”

I’m sure it wasn’t meant that way but, as someone who has been at this for decades (and granted I have issues, lol), I see that statement as very naive in a fashion. “Just have a great attitude and it will be ok!”

Unfortunately, life doesn’t work that way, it’s not that clean cut. We will change because of the constant physical and mental stress that is placed upon us. We’re human. The financial and emotional stresses that accompany diabetes will take their toll. We’re human. As we go through different phases of our lives, there will be additional changes. We’re human.

As I’ve been exploring things with Morpheus, I’ve become convinced that not only are changes inevitable, they are normal and to be expected. As advocates our words can, and do, reach people that we don’t even know. I often wonder if the length of time a person has had their condition affects not only the perception of encouraging statements but also changes the statements we might make to more accurately reflect what we perceive as important and/or encouraging. So instead of the above phrasing, I think I might say

Diabetes will cause you to change. The trick is to accept those changes. Acknowledge them so you can roll them into the new you instead of those changes becoming the new you

Posted in Advocacy, challenges, dblog diabetes support, family, HCSM, support. Tags: advocacy, Depression, diabetes, mental health, Social media. 12 Comments »

The Only “Thing” That Can Empower You is You

March 6, 2012 — Scott

It seems that every day we read a new announcement about some new health app or service that will empower you.

What a load of crap.

The only “thing” that can empower you is you.

You have to do all the work, accept all the responsibility, manage all the other participants (doctors, insurance companies, caregivers, etc) in your health care arena. I use the word arena because sometimes I spend more time managing all those others than I do managing my own condition. To tell the rather absurd truth, I’d really, really like to be in a cage fight with them all sometimes. You could recognize me because I’d be the guy with the chainsaw.

Do you know what a pencil, a hammer, a telephone, a car key and all these apps, social networking sites, devices, and services have in common?

They are all tools.

Simply tools, which by definition help us perform some task with, hopefully, less effort. But of course you need to use the right tool for the right task. I mean trying to use a hammer to drive a screw into a piece of wood is just going to get you hurt.

If people don’t benefit in some tangible way from using these apps or services, then they won’t be used. It needs to be rewarding. One of the most difficult things about managing a chronic condition such as diabetes and many others, is that if you do it right nothing will happen.

Nothing will happen.

That’s a fantastic motivation to keep doing things isn’t it? It might be, however it provides you with exactly zero feedback (positive or negative) which makes staying motivated extremely difficult. In the era before social media, we relied on our doctors to help with motivation. Hopefully, they encouraged you and didn’t just try to scare you into compliance.

This is where power of social media and social apps come to light. You can get immediate feedback. Be it from someone online going “Attaboy” to getting a few points or perhaps a new badge (WOOT!), these all provide an immediate reward and that makes behaviors easier to change and then to maintain.

Since these new pieces of software and hardware are regarded as computer technology instead of “people technology”, they are often sold using the same sales process that I have heard for my 25 years in IT. “This will handle the problem and make it all better”.

Well, that is a half-truth at best. People will handle the problem. The real question is “Will this technology make my life easier on a day to day basis and how will it work for me?” Often people buying get sucked into the “it’s a fantastic silver bullet” spiel and once it is deployed… well, lets just say things unexpected can happen.

Remember, people handle problems. People solve problems.

Apps, devices, systems make handling problems easier (hopefully!)

You are a person. Given the right tools, you can empower yourself.

But you have to do it.

** I’m going to put a slight caveat in here. Not everyone is going to need or want to be an empowered patient. It takes a lot of work, honestly, so it is up to every individual to decide what is proper for them in their own situation. It is not proper for anyone to say you MUST do something in this regard, it is an extremely personal decision.

Posted in Advocacy, dblog diabetes support, HCSM, support. Tags: advocacy, Depression, diabetes, Social media, type 1. 8 Comments »

A Disturbing Search

January 20, 2012 — Scott

I’ve thought for a long time that every diabetes diagnosis & treatment regimen should include counseling right along with the medications and the medical professionals that will come and go during our lifetime with diabetes. In fact, that should be the case for any chronic or life-altering health situation.

I’m doing that now and I’ve put myself out here as someone who is clinically depressed and diabetic. Granted these postings mostly help me, but I also hope that my discussions can help people know it’s OK. It’s OK to seek help when you or a loved one has diabetes or any other chronic condition for that matter. Non-health related life-changing events can also use some help sorting out now and again. That’s OK.

Because, dammit, life is hard enough and diabetes is another layer of stress, anxiety, fear, anger, frustration all rolled up in a little thing we call our lives.

It’s OK.

I’ve always felt as a diabetes advocate I have a responsibility to tell it like it is and to show that you don’t need to be a “perfect” patient to have a long, fulfilling life. Depression has always sapped that “fulfilling” portion of my life and that is what I want to change now.

Putting it all out here about mental health is uncomfortable, not merely because I am searching for and looking at things that I spent 4 decades hiding from. And it’s not merely because I am discussing some things that are very personal & private to me in a very open space. It’s not because there is such a stigma associated with mental health.

Without really intending to, I seem to have moved into a mental health advocacy role as well. And that’s truly uncomfortable because someone, someone I may influence, found my blog using the search phrase:

decided to let diabetes kill me

That’s not OK with me. I wish I had a way to reach out through that search phrase and find that person. Try to tell them they are not alone, that what they are feeling is normal, and hopefully help them find what they need. If you are reading this now, please talk with someone, anyone, even me. Because it is OK.

I had kind of liked how I was writing about all this, it was helping me put some order to the jumble of thoughts and emotions that are part of this journey. That search phrase is making me question my approach though. I guess Morpheus and I will have a topic of discussion next time.

And that’s OK too.

Posted in Advocacy, dblog diabetes support, depression. 11 Comments »

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