Living With A Purple Dog

The Disability Hearing

2010-04-27T23:08:00.003-05:00

About a month ago we had a call from Ryan's (Kyle's) attorney saying a date had been set for his disability claim hearing. He had made application a long time before he died, was rejected (as are most), and the attorney filed an appeal. It seems like this happened quite a while before he died. 20 months after he left us, he finally gets a disability hearing. We were ready to walk away, I have no interest in taking money from the Social Security Administration after he's gone, but the wife and I discussed it and decided that, if for no other reason, the attorney could recover some of her costs. She really is a caring and compassionate person. So we decided to proceed.

We walked into the hearing room and there was my wife and I, Ryan's attorney, the judge, a medical expert on speaker phone, and a vocational expert. They all had files as thick as a big-city phone book. They were referencing many exhibits, sub-exhibits, schedules, and so forth. They had his counseling records, his medical and hospital records, his psychiatrist's records. Things he'd NEVER want to share with anyone, and it was an open book. To hear his life reduced to a stack of papers was almost more than I could handle, and I choked up at times during the testimony. There was information read aloud he would NEVER want us, let alone others, to know. It was really sad. We wanted them to know what a caring, compassionate, loving, brilliant kid he was, but that wasn't material to the case.

The system is broken, probably irreparably. It's designed to deny benefits rather than help those in need. It sucks out the motivation, the self-worth, the soul of those attempting to collect disability. Unfortunately, it won't change, given the state of politics today.

The weeks leading up to this, both my wife and I fell into a depression. The deepest depression I've had since he died. The day after the hearing, we're both improving a bit, but it may take a while.

A Chapter Read and Closed

2009-06-03T00:25:00.003-05:00

It's been almost 10 months since Ryan (Kyle) died. The sharpness of the pain has faded, and that hurts also. It's like we're no longer feeling his death like we used to, and that brings about feelings of guilt. Last night we were eating dinner and the phone rang. Someone asked for Ryan, and my daughter handed the phone to me. It was a recruiter. I told her Ryan passed away, she felt bad, and said she wouldn't call again. I hung up, and we all sat there and cried. But those times are less frequent.

I've been asked why I'm no longer blogging. I am, albeit infrequently. I'm also spending time on Facebook. My blog is a general blog, meant to give a personal outlet. I no longer blog about my bipolar disorder, the sharing of that part of my life is gone with Ryan. I have moved on. I'm not removing this blog, or our BipolarSupport.blogspot.com blog. I'm leaving them up as a reminder to me of how much things have changed, and as a reminder of yet another chapter in my life that is read and done.

Here's a favorite family picture from either 1995 or 1996. Ryan is sitting next to my wife, posing, as he did for every picture we took of him:

A Few Pictures

2008-10-25T19:28:00.007-05:00

It's been a rough 10 weeks, and it's time to post a few pictures.

Our Ryan (Kyle) a couple of years ago.

Ryan (Kyle), his girlfriend, EJ, and his little sister. He was so good with his sisters, the greatest big brother they could ever want.

Ryan (Kyle) and Mom.

It's been a bitch, but everyone is making it through each day. I may do another post in the future about some of the support resources we found.

Thanks To All

2008-09-01T00:30:00.003-05:00

Thanks to all for the thoughts, prayers, emails, flowers, and everything else. It means more to us than you'll ever know. Sorry if I haven't personally responded, it's hard enough to tie my shoes.

We're still around, battling through. I may post more later, but wanted to say thanks.

Final Thoughts

2008-08-18T10:12:00.009-05:00

My wife used to say that our kids were a stable of thoroughbreds. We had 4 magnificent stallions and a unicorn. The unicorn was beautiful, magical, and enhanced the lives of anyone crossing his path. He was creative and brilliant. He taught us about true forgiveness. He taught us to love unconditionally and not to judge. He taught us to laugh and have fun under any circumstance. Over the years we tried, foolishly, to turn the unicorn into a stallion. The unicorn tried valiantly to become a stallion. We all came to realize that a unicorn is magic, and can’t be kept forever. Kyle was our unicorn, and we were blessed to have him 24 years.

Kyle's (Ryan to us) memorial service was yesterday. There were hundreds of people - so many people they had to set up folding chairs in the hallway outside the door. It was an awe-inspiring testament to the power of his life, and the impact he made on so many people's lives. He packed more living in his 24 years than most people would in 10 lifetimes. The service was beautiful. Kyle was a very spiritual person, and had a couple scripture verses on his wall they incorporated into the service. We sang his favorite hymn - "Life Flows On In Endless Song" at the end. There was a guitarist playing 2 songs by his favorite band, Five Iron Frenzy, "Every New Day" and "If You Could See Me Now". It was wonderful.

Now comes the inevitable soul-searching.

I'm wondering if it was a mistake to medicate Kyle. My wife says absolutely not, it was the right thing to do. His most debilitating symptom prior to treatment was his all or nothing perfectionism that manifested itself in terrible outbursts of temper. Not directed at other people, but at himself. It was so painful to watch. His treatment did take care of that, and we were all thankful.

But as things went on, as so often happens, one med begets another, and before long he has a laundry list of medication. He was medicated to the point he wasn't experiencing life at all. His last 2 weeks seemed to be good weeks for him, but he still seemed over-medicated.

His doctors and care workers were exceptional. This was NOT a case where they callously over-medicated. But Kyle would ask for more and more. He couldn't sleep, or his anxiety was particularly bad, and so forth. The doctors, truly interested in his comfort, would try to help him. This is how he ended up with such a large amount of daily meds.

His death appears to be a freak accident. He fell face first into a coffee table in his room. The TV cord was exposed, and the TV was on the ground. We are guessing he tripped on the TV cord, and fell into the table. This accident could have happened with or without medication or alcohol, so I'm not blaming his death on that.

So why am I questioning if medication was the right choice? It comes down to a quality of life issue. Early in his treatment, when the Lamictal started to balance him and took away his inward-turned angry outbursts it was a very good thing. As things continued, and they added more and more medication, he lost the ability to do many things. Towards the end he was having a hard time leaving the house or meeting anyone. The disabilities he'd acquired were as debilitating as the one's he'd fixed. Having the benefit of hindsight I'm wishing he could have lived his last few months in a different way. Or do I? The last few months were very memorable to my daughters, who would hang out and play games with him every day this summer. The old Kyle would have been gone half of the time, and we'd have been worried constantly.

I will wrestle with this the rest of my life.

If anyone else is in the same boat, take your child for who they are. My wife checked on Kyle every day. She hugged him every day, and told him she loved him every day of his life. Whether he was in treatment or not, or properly medicated or not, is meaningless. It likely didn't impact when he died. What did matter were the people and opportunities that made him feel good about himself. The opportunities his family had to make him feel loved and important. That we can look back and know we hugged and told him we loved him. When it's over, unconditional love is all that matters.

We'll Miss You Kyle

2008-08-14T21:44:00.004-05:00

Our son Kyle has left us, he was killed today in an accident in our home. He was 24 years old.

While Kyle suffered terribly at times, he also lived life to the fullest, and loved more deeply than words could describe. My wife used to say, "he was a unicorn in a stable of thoroughbreds."

I'm going to miss you, kid.

Stick A Fork In Me...

2008-05-31T23:57:00.005-05:00

Stick a fork in me, I'm done.

Maybe.

I've hit that place where the need and desire to blog is no longer there. My former colleague, advocate John McManamy tells me this is one of the last steps in the recovery process. I suppose he's right, I really want to put this all behind me. I'm tired of having life revolve around my bipolar disorder symptoms.

Let me be clear - this is not to say I've recovered. I'll never be "recovered". But I'll never get any closer by dwelling on my disorder all day every day. This is a necessary step for me to move closer to the mainstream.

Kyle is doing well, and thanks to all who have written and asked. He's moderately stable, and his drinking seems to be diminished. But they have him on benzos for anxiety, and that worries me. It HAS helped him, but I dread the inevitable withdrawal.

I'm having a very hard time responding to emails and comments, and for this I apologize. I've received some long emails from people who are hurting, and I'm not capable of reading the entire message. If I haven't responded to you in a week or two I'm sorry, but I probably won't. My inbox is so full any older messages won't ever make it back to the top of the stack. But I still would like to hear from friends.

I've been blogging long enough to know that most serious bloggers who say goodbye are back within a month. I won't say I'll never post again, but it will be even less frequent than it is now.

Thanks to all for the support and friendship over the years.

It's Very Clear

2008-05-16T18:12:00.002-05:00

It's very clear, at least to me, that I have lost some cognitive ability in the last several years. I just finished my second week of training on the new job and it's not been pretty. We are working examples along with the instructor, and the class is waiting for me at every step. I am that old person that I used to hate when I was younger because they slowed me down. Back then I moved a million miles an hour, and could accomplish anything. It's not that way anymore. The problem is, I know what I used to be, and it's hard to accept less.

Now I'm not saying this to elicit sympathy. While frustrating, I'm finding this quite interesting. I think, whether right or wrong, that this is a result of my treatment. From the time I took my first psych med I've been fascinated by what each med does to me. Some meds have been helpful, some have been horrifying. My current scenario is another way I've been impacted by psych meds. I'm NOT saying it's a mistake to be taking psych meds, I firmly believe my family is much better off since I began treatment. But it's made me average, or maybe even a little below average in some ways. And that's hard to take.

Enough for this week. It's Friday and this will be a great weekend.

Officers Leave Man in Shackles in Lobby of Mental Hospital

2008-05-10T00:37:00.000-05:00

Officers Leave Man in Shackles in Lobby of Mental Hospital

A Sarpy County judge created a potentially dangerous situation by ordering two deputies to leave a 19-year-old jail inmate with mental problems at a psychiatric hospital, even though the hospital did not have room, a state official said Friday.

The deputies left the man in shackles in the hospital lobby.

Sarpy County Attorney Lee Polikov defended Judge Robert Wester's decision, saying that the Lincoln Regional Center should have had the bed space needed to accommodate the man.

"I think what's out of line is that the system doesn't have adequate facilities for mental care," Polikov said. "I can't speak for the judge, but I'm not sure what his alternatives were."

Wester determined Thursday that the man was incompetent to stand trial and told Sarpy County Deputies John Sorensen and Ken Miller to transport him to the Lincoln Regional Center. The man was in court on an assault charge and a couple of traffic offenses.

People are routinely held at the regional center until they are considered mentally prepared for trial.

When deputies arrived at the regional center, officials there told them there was no room for the man. The deputies notified the judge, who told them to leave the man there or go to jail themselves for being in contempt of his orders, said Sarpy County Sheriff Jeff Davis.

"The judge said, 'Look, I gave you an order, and you've got to walk away,'" Davis said. "He said, 'I'm giving you an order, and if you defy that order, you'll be in contempt.'"

This is incomprehensible. But given the county, no surprise. This county contains Offutt Air Force Base, the home of Stratcom. It's a well-populated county, yet the entire criminal justice system of Sarpy County Nebraska is so harsh, ignorant, and backwards, it's mind boggling.

Angel Food

2008-05-06T05:50:00.002-05:00

There's a program in the US called Angel Food. I first heard about it when my son wrote a newspaper article about a small town in Iowa doing this. Then our local DBSA chapter started talking about it. It's a wonderful program to buy food VERY inexpensively.

Food is sold in units, and units are $30.00. The unit contains a variety of food, relatively healthy choices, and should sustain a family for a week or so. Below is this month's menu:

2 lb. Fully Cooked Meatloaf
1 lb. Beef Fajita Strips
3 lb. Breaded Frying Chicken
2 lb. St. Louis Style Ribs
2 lb. Lasagna Dinner Entrée
1 lb. Gourmet Sausage
1 lb. Fully Cooked Meatballs
16 oz. Broccoli
15 oz. Refried Beans
12 ct. Tortillas
26 oz. Pasta Sauce
16 oz. Pasta
6 oz. Pancake Mix
16 oz. Fresh Carrots
3 lb. Golden Yukon Potatoes
4 oz. Chicken Noodle Soup (Makes 64 oz.)
4 lb. California Oranges
1 Dessert Item

All that for thirty bucks. In addition, there are a few other "add-on" units of meat you can get very cheap also.

It's easy to do, you go the the website, http://www.angelfoodministries.com/ to locate your closest distribution point. You contact them with your order, then pick up on the distribution day. Bring a large box (a large roughneck storage tub is great). You may wait in line to pick up, the program is getting popular.

Scared

2008-05-05T18:18:00.002-05:00

As I mentioned earlier, I just started a new job. Like most of you out there, I'm not lacking in intelligence. Intelligence seems to be a bipolar trait. But for the first time in my life, I feel inadequate in that respect. I started a month of classroom training, and I'm being left in the dust. I'm no stranger to classrooms, I have a bachelors degree, went back for a technical associates, and have taken several other classes since. After my bachelors, I never received a grade lower than A. I HAVE to be one of the best in the class, it's my nature, there is no other option. But at this point I'm not fighting to be the top in the class, I'm struggling to survive.

This has been an obsessive concern of mine over the last several years, that my meds are slowing me down mentally. I suspected it, but never had a way of quantifying or validating those concerns. After today I'm as certain as I can be. Unless I'm in class with a bunch of damn Einsteins there's no way they're all going to be sharper than me.

I'm more than a little scared.

New Chapter In LIfe

2008-05-03T02:11:00.003-05:00

A lot going on right now.

I started a new job this week as a consultant for a large, well-known insurance company. I love it. They run a tight ship, for example there's no internet access at all. But I gain a lot, such as great working conditions and people, and of course, more income.

Next, I gave up my gig at BipolarConnect. I loved the money, but it was time to move on.

There's been more, and I'll follow up.

Redesign Thoughts

2008-04-13T22:38:00.003-05:00

It's not perfect, and it's not exactly what I was after. But it's better than it was. There's still a lot to do, little tweaks that will take weeks to finish.

I have always loved Blogger. A lot of bang for a secure, easy to use, free product. To me the benefits have always outweighed the limitations. After this redesign I'm not so sure. I'm seriously thinking about moving to Wordpress - not the free online version, the full hosted solution with your own domain. Here's how they stack up:

Ease of Use:
Blogger by a mile. Non-techies can be up and blogging in minutes. Wordpress requires some geeky research and practice. You'll figure it out, but it's not blogger.

Features:
Wordpress by a mile. You can use Wordpress as a blog, or as a full-blown content management system. The add-ons, widgets, and theme options are limitless. For Blogger it's not terrible, but it doesn't compare with Wordpress.

Security:
Blogger by a country mile. When you put your blog on blogger it will be there. In a month, a year, or more. It's not going anywhere. For Wordpress if you, for example, go to the hospital and can't pay for your webhosting, it's possible a webhost (not me) would delete your account. If you're not backed up (are we ever adequately backed up?) you've lost everything you've worked so hard on. If that happens to you, call me, I'll sit with you on the first suicide watch.

Design:
Wordpress. There is so much flexibility in design. Blogger is better than they used to be, but it's still not easy to get a custom design on Blogger.

Spam:
Blogger is incredibly good at recognizing and killing spam. Wordpress is getting better, but it's a clumsy process with a sophomoric look. For such a professional product, I expect more.

How about others? Any pros or cons?

Beginning Redesign

2008-04-13T15:04:00.002-05:00

Unfortunately you can't take Blogger off-line while you make changes. So if you visit in the next hour or two you could find anything. With a little luck it will only take an hour or two.

Overlooked Emails

2008-04-13T01:45:00.002-05:00

Over the last couple of months my frame of mind was so bad I was not capable of answering email. Today I was finally able to do some cleaning, and I filtered out hundreds of emails I could not possibly answer. I still have them, I filtered them into folders. But if you sent me an email I did not answer, my sincere apologies. Please send again and I'll do my best to answer.

Site Redesign

2008-04-12T01:22:00.001-05:00

Doing a complete site redesign. I'm tired of this plain look, and want something different. So if you see my blog up and down, you'll know why.

Another Manic Discovery

2008-04-12T00:37:00.003-05:00

Please don't try this at home, I'm a professional.

Sleep medication Ambien (Zolpidem)is some good shit. Some REAL good shit. When I'm not manic, 5 mg knocks me out. Most need 10 mg. But if you stay awake through that, it's like 6 or 7 scotches (PLEASE don't drink and do this, I want you as a reader tomorrow). Take 20 milligrams and you'll be talking to people who aren't there. Or maybe they really are, and you only see them in your dimension...

Sleep walking is common, as is sleep eating, and even sleep sex. My wife says she's gotten quite a bit lately. To that I want to know - was I any good? Did I seem to enjoy it? Was it more or less kinky than my normal self? I halfway expect to see a case of Ambien show up on my doorstep, ordered by wife from some remote pacific island where they can't even read a script.

2008-04-09T19:55:00.002-05:00

This has been an interesting month.

First, the mania is hanging tough. The negative effects of the mania aren't nearly as strong as they were, and it's not as debilitating, but it's still there. Sleep still comes grudgingly, I still can't read, I still can't write, I couldn't begin to hold my hand steady, but the danger is gone. I'm not going to OD, or do anything incredibly stupid, although I came close on both counts.

I got a new job! Out of the blue a recruiter I'd worked with in the past called me. I told her I wasn't looking around, but I'd be willing to listen. I listened, she was looking for a consultant to be placed with one of the worlds largest insurance companies. It really was an interesting position, so my curiosity piqued, I agreed to talk to the employer. This was Monday. Tuesday afternoon I interviewed. Wednesday the recruiter called to say I "rocked their world". Thursday I had an offer in hand. So I went from being more or less contented with my job to having a new career in 4 days. How about that? In the interview I had zero problem with energy, enthuiasm, and conversation. Finally something positive about the mania?

I'm Watching American Idol's charity show right now. It's a barometer of Bono's career, isn't it? As he winds down, they have to wind up their fundraising.

I was flattered to receive an email from Andy Behrman - Electroboy. If you haven't read his book, it's a great read. Head over to his website and sign up for his newsletter.

My webhosting business is doing well, HomepageWebs (gjx.us). If you know anyone needing webhosting, drop me a line.

Kyle is doing great lately. More details later.

Thanks to all for your emails and thoughts. It's much appreciated.

More Paradox

2008-03-25T12:40:00.002-05:00

I'm way behind on emails, comments, and phone calls. If I owe you one, I'll catch up soon, I promise.

Yet another feather in the cap of bipolar paradox:
The less sleep I get, the more wired I become.

Cleanup In Aisle...

2008-03-22T22:22:00.005-05:00

I'm still struggling to link together multiple thoughts into a cohesive paragraph, but the promise of improvement is there.

This brings up the need for clean-up. I left a lot of things hanging over the last few months, a lot of emails not returned, comments not answered, even bridges burned. Sorry for all that. I'll do what I can to right things, when I can.

The recent lack of sleep gave me time to work on re-orging my web hosting business. It wasn't quality time, in 4 hours I'd get 15 decent minutes of work, but I still got a lot done. The site is still a work-in-progress but it's good enough for launch. For those who don't know, webhosting is providing the server space for a website. Every website needs to be "hosted" on a server. When you see those websites or blogs with their own domain name - mysitename.com, those people made arrangements with a hosting company to host that site. I stopped accepting web hosting customers several years ago, I had as many as I wanted to personally support. Well, I outsourced a lot of my support to people who know a lot more than I, and that means I am able to support more customers. I now have lightening-fast 24/7 support. I'll still personally handle most of the support issues during the day, there's so few of them, but the server techs will handle it outside of that. A win-win. Anyway, if anyone knows someone needing webhosting or design, have them look me up:
Homepagewebs - http://gjx.us

For those who observe Easter may you have a joyous Easter holiday.

Transcendental Blues

2008-03-21T12:55:00.000-05:00

In the darkest hour of the longest night
If it was in my power I'd step into the light
Candles on the altar, penny in your shoe
Walk upon the water - transcendental blues.

Happy ever after 'til the day you die
Careful what you ask for, you don't know 'til you try
Hands are in your pockets, starin' at your shoes
Wishin' you could stop it - transcendental blues.

If I had it my way, everything would change
Out here on this highway the rules are still the same
Back roads never carry you where you want 'em to
They leave you standin' there with them ol'
Transcendental Blues.

--Steve Earle

Irish-Envy?

2008-03-17T08:57:00.002-05:00

Why the Irish-envy? Violence, bagpipes, terrible food, and warbling-voiced folk singers.

Blech.

Symmetry

2008-03-16T09:37:00.002-05:00

Symmetry is not optional.

7 Words To Please A Manic Mind

2008-03-15T13:12:00.003-05:00

Shit, piss, fuck, cunt, cocksucker, motherfucker, and... tits.

Something's Not Right

2008-03-09T17:15:00.002-05:00

For the last 2 months, at least in the few times I've been able to write, I've talked about how I was on the higher end of the mood spectrum. It started with a slightly elevated feeling about the time I started taking Lithium 3 months ago, and has steadily grown since then. While all the symptoms are intermittant, I'm dizzy, shaky, my heart rate is way up, I get these mini "jolts" or spasms, and insomnia is bad. It's not entirely unpleasant, but my body is coursing with energy, and nervous movement is pronounced and non-stop. But, unlike bipolar hypomania, I have no mental advantage. My mind is struggling to remember anything.

I have no idea what this is, maybe it's a severe mania that the Lithium has knocked down to this level? Maybe it's hyperthyroidism? Lithium toxicity? I'm calling the doc tomorrow, hopefully they can do some quick blood work and get a handle on this.