The Circle Constricts Again.

A gentleman named Dean Barnett wrote:

"As I grew sicker, I had what for me was an extremely comforting insight. I came to view serious and progressive illness as an ever-constricting circle with oneself at the center. The interior of the circle represents the contents of one’s life. As the circle gets smaller, things that were inside get forced out. Some of these things are dearly missed; others that were once thought precious get forced to the exterior and turn out to go surprisingly unlamented."

Dean had Cystic Fibrosis. It claimed his life on October 27, 2008
http://www.boston.com/bostonglobe/obituaries/articles/2008/10/29/dean_barnett_41_conservative_blogger_writer_for_the_weekly_standard/

I wish I had discovered his blog earlier! Now there’s someone who has walked the walk!!

My circle just got smaller. I lost my job on November 19th. I’m really too sick to find another one much less to really work during the day. My job was mostly sitting around waiting for something to break so I could fix it. While waiting, I surfed the ‘Net. Got a lot of reading done but didn’t work very hard.

This was a good thing. Most days, I was too tired to really work anyway. My EF is around 20% but I’m still exhausted most of the time. And getting up at 6:30AM didn’t help at all!

So, I’ve applied for Disability. It could take 2 years or more for a final adjudication. In the meantime, my SO is going to have to kick in to support our household way beyond what he has been. Way more.

I’ve always been very independent. Asking for help, especially financial help is very hard for me to do. Now, that independence is gone.

I knew this would happen eventually. You can’t be this close to dying and still keep working full time like there’s nothing wrong.

At my last cardiologist appointment, he told me that my next hope for any improvement was a breakthrough in new technology. And with the Dimmocrates getting ready to ruin the health care industry, there’s not much hope of that any time soon. Take the profit motive away and innovation will dry up. Why spend all that money to invent something new when you will never see a return on your investment?

So, I guess I just keep going as long as I can.

That’s how I’ve gotten this far: just keep putting one foot in front of the other.

Doctors!

I have a new physical problem.

It’s actually been building up for years. My right shoulder has gotten more and more painful over the past year or so. It’s ached with use or extension for years but in the past year, I’ve been almost unable to use my right arm. It hurts just typing this!

So, I went to an orthopedist. Since I cannot have an MRI due to my cardiac implant, having a torn rotator cuff is difficult to get a definitive diagnosis on. He wants to stick needles in there and see what happens.

Now, I ask you, is this any way to run a popsicle stand?!? You’re suggesting that I let you jam a steel spike into an already painful portion of my body just to see what you find?? And you can’t understand why I have a problem with that??

What are you, nuts?

I’m of the opinion that most doctors have forgotten what it’s like to be at the mercy of people who have none. Most people don’t like needles. Me, I’m terrified of them.

Now, imagine this. You’ve got a health problem. You go to the doctor for it. He suggests a therapy. That therapy happens to be the thing you are most afraid of in this life. Say you’re afraid of heights. So afraid you can’t ride in an elevator because you know you’re standing over a 10-storey hole while doing so. So, said doctor says the first recommended therapy for your problem is to go sky-diving. Or jump off a very tall building, complete with parachute. And won’t consider or discuss any other therapies. What do you do?

Find another doctor!! There has to be another way to treat this condition that does not involve needle torture!!

And, yes, I went to Physical Therapy. That made it hurt worse. Much worse. Totally incapacitated me with pain. So, I don’t think that’s the answer either.

I’ve got a referral to another doctor. Guess I’ll see what he has to say…

UPDATE:

I went to a different orthopod. He diagnosed my should as "frozen". No tears, nothing broken. I'm not sure how using my right arm more made my shoulder freeze up but he seems to be correct. I've gone to a different physical therapist, someone who is interested in actually doing their jobs and helping people, and they've pointed out that if I had really torn my rotator cuff, I wouldn't be able to hold my arm up at all, which I still can do. So, now I got and "get bent" twice a week and it's really helping. Those prissy girls at the other PT place were all wrong!

Victimhood

In 1995, I was struck by an illness that kills 90% of those diagnosed with it within 5 years.

I’m happy to say that, 13 + years later, I’m still here.

I had two choices: claim my victimhood and let the illness have its way with me or fight. I chose to fight.

It would have been much easier to claim victimhood status, file for disability and give in. After all, it’s not my fault. I didn’t do anything wrong. This isn’t a “life-style” disease, like so much cancer is. (You can quite smoking, if you want to.) My heart just got damaged, no one knows exactly how. So, I had the option of giving up and letting life pass me by, ending all too quickly, not with a bang, but a whimper.

I have watched my mother use her (mostly imagined) various illnesses to escape having to live her life. She passed her responsibilities as a mother and housewife on to me when I was only 9 years old. I had adult responsibilities when my greatest worries should have been pop music, school and getting to the mall to be with my friends. She has never recognized what she stole from me nor apologized. I haven’t forgiven her and don’t intend to. Stealing someone’s childhood is an unforgivable crime.

I was diagnosed then my girls were 12 and 8. I could have done the same thing she did and dump my responsibilities onto my eldest daughter. After all, I was far sicker than my mother ever hoped to be. I had the ‘right’ to some rest, right?

Wrong! My kids had a right to a parent who cared about and for them. Not some whiney victim of no use to anybody.

I’m still plugging along. My kids are both grown women now and, hopefully, don’t think too badly of me. I know there were lots of things I didn’t do due to poor health but I tried to keep that to a minimum. No, we never played with that Easy-Bake oven but in later years we baked real cookies together.

I have my regrets, to be sure. I regret ever complaining about having to tuck my younger daughter in for the night upstairs when I was tired. I regret we never got around to making applesauce again before she moved away.

I should have listened to my older daughter sing more before she left home. I gave her lots of space as a teenager. Now, maybe, I think I got too far away.

But, you can’t live your life looking backward, especially when you’re fighting a life-threatening illness. You need to keep that focus forward, to getting better day-by-day, getting stronger.

On that note, I carried in 4 bags of groceries last night, including 5 lbs of potatoes and 3 lbs of onions! Progress!! :-D

Now, if I could only get some of my stamina back, I’d really have something!

And you have to keep remembering that you have no alternative. Victimhood, while it may seem easier in the short term, only causes more problems in the long term. If I don’t get up every morning and go to work, who’s going to make my house and car payments? The government? Hah! Not likely. There’s me and only me to look after me. There’s no giving up and giving in. Hard but true.