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!

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.

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

The health insurance that I currently have has a separate policy for mental heath issues.  Looking at the insurance website’s list of providers shows all manner of psychologists & psychiatrists to choose from.  Calling their offices though reveals the fact that none of these MHPs (mental health professionals) accept my insurance at their practice.

A little further digging exposes what is really going on:  The hospitals that these MHPs are affiliated with do accept the insurance for inpatient care, so the insurer lists them as accepting their insurance.  Personally, I think that is misleading at best and basically it boils down to the fact that if I need counseling, it is out of pocket.

I can spend Flex dollars on these sessions, but since they are rather expensive, I would quickly go through the dollars that I have budgeted for little things like the insulin I need every day to stay alive.  Next year, I believe, the Flex plans will be capped at $2,500.  I will use all those dollars simply on prescriptions.  All endo, ophthalmologist, PCP visits will be out of pocket.  Eyeglasses and any copays due to illness will be out of pocket.  Nothing like taxing the monies that patients need to spend for their health.  But I digress…

I’ve thought for a long time that any chronic or life-altering illness should include counseling as part of the treatment regimen.  Speaking only about Type 1 diabetes, the amount of stress that is placed upon us is unimaginable to those who don’t “get it”.  If you don’t know whether you “get it” or not, you don’t.

I’ve always been resistant to counseling.  And self-help books always just pissed me off.  But, after 40-odd years of diabetes, I finally decided I was ready.  Actually, that decision was probably a culmination of previous decisions and choices I had made over the last few years, finding the DOC and really just not liking myself very much.

Enough about me, the reality of it is that patients with diabetes (of any type, including caregivers) will have better health outcomes if they are able to mentally navigate the various mental, physical, emotional, financial and social tolls that this condition extracts from us every single day.

Better outcomes? Yes, as in less complications and better quality of life.  It always struck me as fundamentally wrong that insurance companies seemed more than happy to pay for amputations, dialysis, or transplants but not willing to help obtain the things that could have prevented these things in the first place!  I know they are “gambling” that we will not be on their plan when complications do occur.

Mental healthcare is just as important as the physical healthcare we require.  After decades of diabetes, it has become a bigger burden than the diabetes.  That’s why every cent I am spending out-of-pocket is worth it, to obtain what I need with no “net” to help  me.

So here is my question:  Insurers, why is mental health not on par with physical health?  Why is only the body worth treating when the things that make us individuals, make us human are not?

** I’m interested, how many other people have had similar experiences with insurance or have similar policies?  How many have no coverage? How many do?

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

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.

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

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

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.

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** 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

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.

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

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.

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

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/

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

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

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com