Thursday, May 21, 2009

It's a new record! 

I survived a new record time (record for me, anyway) of 25 minutes on the Gazelle glider machine. My back is spasming, my legs feel like jello and I practically needed a forklift to get my ass off the couch afterward. But if I don't feel worse than this tomorrow, I'll consider the endeavor a success.

It has taken me a year and two months to work my way up to 25 minutes. I had to start at just five. And I was stuck at 20 minutes for at least a couple of months, so this is a major accomplishment.

I just wish it was possible for me to tell decisively when I've overdone it. I can't go by the old adage that pain is a signal that something's wrong. I hurt whether I exercise or not, and the exhaustion is pretty much constant as well.

In other health news, I saw the Sioux Falls rheumatologist a few weeks ago, and she decided I needed to start tapering off the immuno-suppressants even though they're helping. She doesn't feel I'm sick enough to warrant the risk of cancer than comes with Imuran. So I've cut down from two pills a day to one and a half.

You wouldn't think decreasing the dose by only 25 percent would make that much difference, but it is. I've had headaches and nausea pretty much every day since the change, and I'm losing hair. I'm hoping this will stop in a few days.

The biggest bummer, though, is that the neuropathy got noticeably worse five days ago, to the point where it is almost as bad as when I went to the Mayo Clinic. I didn't even realize that the Imuran was helping that much. But I was getting jagged bolts of pain in my calves Sunday night, and my right arm has been tingly and/or numb off and on since last night.

I don't think I have any choice but to just put up with this. No way is the rheumatologist gonna let me increase the Imuran again, and the only other thing I know that works, prednisone, is just as dangerous. And I'm not sick enough to warrant IV meds either.

Something probably completely unrelated: I am getting really nasty electric shock type of pain down the left side of my neck, starting at the ear and going in a straight line down to what I think is a trigger point in one of the scalene muscles. It started before I changed my medication, so I know that isn't the cause. I see the massage therapist next week, and if that doesn't help, I'll make an appointment with the primary care doc because I've never had a pain like this before.

One piece of good news: I'm gonna pay off the Mayo Clinic this month! Only took a year and a half. Now I've got to increase payments on my loans for the foundation and basement repair; those are gonna take until at least 2011 to pay off.

Hadn't posted a health update in a long time because I figured people were probably tired of my whining, but surprisingly, I've been getting inquiries as to how I'm doing. So basically the news is, I'm still kicking, even though my body's doing a lot of kicking back.

Wednesday, May 20, 2009

Rave of the Day for May 20, 2009: 

I've got the new Green Day CD, "21st Century Breakdown"! I know, I know, I'm supposed to be on a budget, not buying music anymore. But I haven't bought a music CD in over two years, and, well, it's GREEN DAY.

Have listened all the way through once. It's all awesome, but the song that really caught my attention (for obvious reasons) is "Restless Heart Syndrome". Here are the lyrics....

I've got a really bad disease
It's got me begging on my hands and knees
Take me to the emergency
'Cause something seems to be missing
Somebody take the pain away
It's like an ulcer bleeding in my brain
Send me to the pharmacy
So I can lose my memory

I'm elated
Lord knows I tried to find a way to run away

I think they found another cure
For broken hearts and feeling insecure
You'd be surprised what I endure
What makes you feel self-assured

I need to find a place to hide
You never know what could be waiting outside
The accidents that you could find
It's like some kind of suicide

So what ails you is what impales you
I feel like I've been crucified to be satisfied

I'm elated
I am my own worst enemy
So what ails you is what impales you
You are your own worst enemy
You're a victim of the system

I'm a victim of my symptom
I am my own worst enemy
You're a victim of your symptom
You are your own worst enemy
Know your enemy

Monday, May 18, 2009

Rave of the Day for May 18, 2009: 

Not-so-helpful guide to surviving an earthquake, courtesy of The Onion. Naturally, it's hilarious....

Earthquake Safety Tips

Gotta admit, I don't mind not being subject to earthquakes, tsunamis or hurricanes. Now, if we could just convince the tornadoes to not wreak havoc, heh heh....

Friday, May 15, 2009

Rave of the Day for May 14, 2009: 

Got the link to these from the Fibrohugs newsletter. I've related my problems with my long term disability insurance company; here are some specific cases that show I'm definitely not alone....

Unum Frowns on Fibromyalgia

The practice of "independent medical exams", i.e., reviews done on the claimant by practitioners who are paid under the table by LTD companies, has got to be outlawed. And here's an example of the dilemma commonly experienced by claimants:

Unum Plays Doctor, Badly

In my own personal LTD news, my lawyer still has not filed my suit for breach of contract, but says he's gonna do it right away every time I call him. Also, every time I call him, he's less and less enthusiastic about my chances of reinstatement of benefits or even a settlement. It is incredibly disheartening that LTD companies get away with dumping valid claims all the time and very seldom are held accountable for it.

Wednesday, May 13, 2009

Rave of the Day for May 13, 2009: 

Watch this video where Obama talks about making health care more accessible for Americans, and if you agree with his ideas, sign the petition. I did and added a comment that I wanted to do away with pre-existing condition exclusions.

Organizing for Health Care

It's just wrong that so many Americans must do without health care because they can't afford it and/or they are considered "uninsurable". I've heard of too many scenarios where someone survives cancer but loses their job and benefits, and then they can't get new insurance because of the cancer, even if they have been in remission for several years.

Tuesday, May 12, 2009

It's Fibromyalgia Awareness Day! 

Here's a poster I made several years ago....

Fibro Awareness

Am hoping that research will discover the cause of fibromyalgia soon so we can get down to the business of recognizing it as a disease rather than a syndrome. Once we know how it happens, we will be better equipped to figuring out how to make it go away or at least how to consistently improve the quality of life for those who have it.

Monday, May 11, 2009

Rave of the Day for May 11, 2009: 

Now, here are some worth goals. Link courtesy of a Facebook friend....

Gandhi's Top 10 Fundamentals for Changing the World

I never did make much progress on the Gandhi quote page I had started on my spiritual website. Just another on my endless "wish I could get done" list.

Sunday, May 10, 2009

Rave of the Day for May 10, 2009: 

New trailer for "Harry Potter and the Half-Blood Prince". Amusing because it's mainly about girl trouble, heh heh....

Saturday, May 09, 2009

Rave of the Day for May 9, 2009: 

I may have posted this before, but if so, it's worth a re-run. Thanks to Pete for this....

The Seed

A successful business man was growing old and knew it was time to choose a successor to take over the business. Instead of choosing one of his Directors or his children, he decided to do something different. He called all the young executives in his company together.

He said, "It is time for me to step down and choose the next CEO. I have decided to choose one of you." The young executives were shocked, but the boss continued. "I am going to give each one of you a SEED today - one very special SEED... I want you to plant the seed, water it, and come back here one year from today with what you have grown from the seed I have given you. I will then judge the plants that you bring, and the one I choose will be the next CEO."

One man, named Jim, was there that day and he, like the others, received a seed. He went home and excitedly told his wife the story. She helped him get a pot, soil and compost and he planted the seed. Every day, he would water it and watch to see if it had grown. After about three weeks, some of the other executives began to talk about their seeds and the plants that were beginning to grow. 

Jim kept checking his seed, but nothing ever grew. Three weeks, four weeks, five weeks went by, still nothing. By now, others were talking about their plants, but Jim didn't have a plant, and he felt like a failure. Six months went by -- still nothing in Jim's pot. He just knew he had killed his seed. Everyone else had trees and tall plants, but he had nothing. Jim didn't say anything to his colleagues, however. He just kept watering and fertilizing the soil - he so wanted the seed to grow.

A year finally went by, and all the young executives of the company brought their plants to the CEO for inspection. Jim told his wife that he wasn't going to take an empty pot. But she asked him to be honest about what happened. Jim felt sick to his stomach; it was going to be the most embarrassing moment of his life, but he knew his wife was right. He took his empty pot to the board room. When Jim arrived, he was amazed at the variety of plants grown by the other executives. They were beautiful -- in all shapes and sizes. Jim put his empty pot on the floor and many of his colleagues laughed, a few felt sorry for him!

When the CEO arrived, he surveyed the room and greeted his young executives.

Jim just tried to hide in the back. "My, what great plants, trees, and flowers you have grown," said the CEO. "Today one of you will be appointed the next CEO!"

All of a sudden, the CEO spotted Jim at the back of the room with his empty pot. He ordered the Financial Director to bring him to the front. Jim was terrified. He thought, "The CEO knows I'm a failure! Maybe he will have me fired!" 

When Jim got to the front, the CEO asked him what had happened to his seed - Jim told him the story. 

The CEO asked everyone to sit down except Jim. He looked at Jim, and then announced to the young executives, "Behold your next Chief Executive Officer! His name is Jim!" Jim couldn't believe it. Jim couldn't even grow his seed.

"How could he be the new CEO?" the others said.

Then the CEO said, "One year ago today, I gave everyone in this room a seed. I told you to take the seed, plant it, water it, and bring it back to me today. But I gave you all boiled seeds; they were dead - it was not possible for them to grow.

"All of you, except Jim, have brought me trees and plants and flowers. When you found that the seed would not grow, you substituted another seed for the one I gave you. Jim was the only one with the courage and honesty to bring me a pot with my seed in it. Therefore, he is the one who will be the new Chief Executive Officer!"

* If you plant honesty, you will reap trust 

* If you plant goodness, you will reap friends

* If you plant humility, you will reap greatness

* If you plant perseverance, you will reap contentment

* If you plant consideration, you will reap perspective

* If you plant hard work, you will reap success

* If you plant forgiveness, you will reap reconciliation

* If you plant faith in God, you will reap a harvest

So, be careful what you plant now; it will determine what you will reap later. 

"Whatever You Give To Life, Life Gives You Back"

Friday, May 08, 2009

Rave of the Day for May 8, 2009: 

Part One of a fascinating documentary about Japanese director Akira Kurosawa. Link courtesy of a Facebook friend....

Thursday, May 07, 2009

Rave of the Day for May 7, 2009: 

Got these from the CFIDS newsletter. They are the first-hand accounts of two men's long road to diagnosis.

This one has lived in Germany and Australia.....

Personal Profile: Mr. Henrik Giertler

And this story comes from Japan....

Personal Profile: Mr. Hidehito Doyama

While the fact that the first man has not gotten relief from any of the remedies he's tried is potentially discouraging, it does demonstrate that there is a certain percentage of patients for whom there is no single easy answer. I can definitely relate to this.

Wednesday, May 06, 2009

Rave of the Day for May 6, 2009: 

Enlightenment courtesy of the Dalai Lama in this interview with Charlie Rose. Got the link from a Facebook friend....

Saturday, May 02, 2009

Rave of the Day for May 2, 2009: 

Got the following from Michael Moore's newsletter. Only wish I'd ever had as much money to lose as Madoff's followers had....

The following piece written by Michael Moore appears in this week's Time magazine (and in full at Time.com) as part of their annual "Time 100" issue highlighting their choices for "The World's Most Influential People."

Elie Wiesel called him a "God." His investors called him a "genius." But, proving correct that old adage from the country and western song, you never really know what goes on behind closed doors.

Bernie Madoff, for at least 20 years, ran a Ponzi scheme on thousands of clients, among them the people you and I would consider the best and brightest. Business leaders, celebrities, charities, even some of his own relatives and his defense attorney were taken for a ride (this has to be the first time a lawyer was hosed by the client).

We're clearly in one of those historic, game changing years: up is down, red is blue and black is President. Aside from Obama himself, no person will provide a more iconic face of this end-of-capitalism-as-we-know-it year than Bernard Lawrence Madoff.
Which is too bad. Yes, he stole $65 billion from some already quite wealthy people. I know that's upsetting to them because rich guys like Bernie are not supposed to be stealing from their own kind. Crime, thievery, looting — that's what happens on the other side of town. The rules of the money game on Park Avenue and Wall Street are comprised of things like charging the public 29% credit card interest, tricking people into taking out a second mortgage they can't afford, and concocting a student loan system that has graduates in hock for the next 20 years. Now that's smart business!

And it's legal. That's where Bernie went wrong — his scheming, his trickery was an outrage both because it was illegal and because he preyed on his side of the tracks.
Had Mr. Madoff just followed the example of his fellow top one-percenters, there were many ways he could have legally multiplied his wealth many times over. Here's how it's done. First, threaten your workers that you'll move their jobs offshore if they don't agree to reduce their pay and benefits. Then move those jobs offshore. Then place that income on the shores of the Cayman Islands and pay no taxes. Don't put the money back into your company. Put it into your pocket and the pockets of your shareholders. There! Done! Legal!

But Bernie wanted to play X-games Capitalism, run by the mantra that's at the core of all capitalistic endeavors: Enough Is Never Enough. You have the right to make as much as you can, and if people are too stupid to read the fine print of their health insurance policy or their GM "100,000-mile warranty," well, tough luck, losers. Buyers beware!

It would be too easy — and the wrong lesson learned — to put Bernie on TIME's list all by himself. If Ponzi schemes are such a bad thing, then why have we allowed all of our top banks to deal in credit default swaps and other make-believe rackets? Why did we allow those same banks to create the scam of a sub-prime mortgage? And instead of putting the people responsible in the cell block in Lower Manhattan, where Bernie now resides, why did we give them huge sums of our hard-earned tax dollars to bail them out of their self-inflicted troubles? Bernard Madoff is nothing more than the scab on the wound. He's also a most-needed and convenient distraction. Where's the photo on this list of the ex-chairmen of AIG, Merrill Lynch and Citigroup? Where's the mug shot of Phil Gramm, the senator who wrote the bill to strip the system of its regulations, or of the President who signed that bill? And how 'bout those who ran the fake numbers at the ratings agencies, the lobbyists who succeeded in making sleazy accounting a lawful practice, or the stock market itself — an institution that's treated like the Holy Sepulchre instead of the casino that it is (and, like all other casinos, the house eventually wins).

And what of Madoff's clients themselves? What did they think was going on to guarantee them incredible returns on their investments every single year — when no one else on planet Earth was getting anything like that? Some have admitted they did have an inkling "something was up," but no one really wanted to ask what it was that was making their money grow on trees. They were afraid they might find out it had nothing to do with gardening. Many of Madoff's victims have told investigators that, over the years, they have made much more than the original investment they gave Bernie. If I buy a stolen car from the guy down the street, the police will take that car from me regardless of whether I knew it was stolen. If I knew it was stolen, then I go to jail for receiving stolen property. Will these "victims" give back their gains that were fraudulently obtained? Will the head of Goldman Sachs reveal what he was doing at the meetings with the Fed chairman and the Treasury secretary before the bailout? Will Bank of America please tell us what they've spent $45 billion of our TARP money on?
That's probably going too far. Better that we just put Bernie on this list.

Moore's new documentary on the wonders of capitalism will be in movie theaters this fall.

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