It's been almost four months since my last entry. Time has not been kind to me, since I have so few hours each day to accomplish those tasks which need to be done. I haven't felt much like writing about myself, in fact, I don't derive much pleasure from it. I never really maintained the requisite discipline to keep a daily journal. I have difficulties enough to keep my food log up to date.

Even though I did not personally know Tim Delaney, I have been deeply saddened by his forced departure from WDI. Since Iger took over day to day operations from Eisner in the spring of 2005, I've seen one senior Imagineer after another, shoved to the street. Nina Rae Vaughn, Barry Braverman, Bruce Gordon, Cory Sewelson, Rick Rothschild, John Horny, and now Tim Delaney. There are numerous others whom I've failed to mention, but you get the gist of things in Glendale. If you're at least a 20-year veteran and make more than slave wages, your job security ain't worth squat.

As far as I can tell, Mr. Iger believes that his compensation is more valuable to the company than the compensation of the artists who create the magic that the company profits from. His contributions are seemingly worth TENS OF MILLIONS each year, whereas six-figure salaries for those executives who create the product and mentor the future creators of said product is excessive. Really? You're worth an eight-figure compensation? But the veterans who keep the company products in such high demand are worth much, much less than six? Unbelievable the arrogance and self-importance you embody. I'm guessing you probably think Walt was grossly overpaid as well.


I'm fortunate to have the Walt Disney Family Museum just a few miles from my front door. I became a Founding Member earlier this summer, and look forward to the special events, films, and lectures that the Museum will host over the coming months. I've already spent several hours perusing the exhibits, and still haven't experienced but a small portion of all it offers. I could literally spend another hour or two hovered over the Walt's Disneyland model. The golden memories of my childhood summers at Disneyland, embodying the Golden Age of Imagineering, all contained in this fabulously detailed model. But the model and my memories are also bittersweet, knowing what is happening in Glendale, with the systematic dismantling of WED/WDI, Walt's magic factory.

Here's to all the Imagineers who helped to make my fantasy dreams come true inside Disney parks. Thanks for the memories.

Letting go is such a difficult thing to do. I've always known it's more difficult for me than many individuals, as evidenced by the huge storage locker overflowing with boxes of who knows what that I've kept for decades. I wish I had an easier time with stuff of this nature.

I've known about the five stages of grief (denial, anger, bargaining, depression, acceptance) since grad school. I've spent the last decade in denial, as evidenced by the tens of thousands of dollars I've spent on the latest medical treatments and diagnostics, any new theory or research that showed a glimmer of a cure. But with the latest testing at UoP's Fatigue Lab, the denial phase is over.

The test results were quite abnormal; there's no denying the severity of my condition, nor its permanence. I'm not just a deconditioned couch potato. My metabolism is broken, my mitochondria cannot function properly. When I'm not sitting on my butt doing basically nothing, even when I'm just taking a bath or doing light housework or some quick grocery shopping, my body is working anaerobically, beyond aerobic functioning. That's why I'm always fatigued from the simplest physical expenditure, and I haven't fully accepted it yet.

I've been dancing back and forth between anger and depression since testing in early May, with the occasional brief detour at bargaining. (I'm not very good with compromise, so bargaining is another difficult avenue for me.) I don't know how much longer I'll be going through these phases until I finally reach acceptance. I hope it's soon, but I've never been one for quick adjustments. I'm still not used to living in a downtown high rise, and we moved from our suburban duplex almost 18 months ago. This is going to take some time to get through, how much time is difficult to determine.

Yeah, I know. One day at a time and all that sh*t.

Hard to believe that five months have blown by since my last entry. So much has changed for me since then... almost as if I'm a different person. Well, for some things, I guess I am.

I haven't felt this much physical pain in a long time. Every muscle is known to me, especially in the extremities. I feel as though I've been hiking in the Sierras, which I used to do as often as possible, over two decades ago. That achy kind of bone fatigue at the end of a long hike and vertical ascent is how I feel right now, even though I only rode a stationary bicycle yesterday afternoon for eight short minutes.

Here I sit, waiting for my hot bath to finish filling, in a Stockton hotel room. I'm waiting for my second day of testing in the Fatigue Lab at University of the Pacific. Two days of fitness testing to "prove" to SSA that my chronic fatigue syndrome is real. And this test is now considered the gold standard for CFS diagnosing, which is why I'm putting myself through this torture. Hard to imagine that I used to be such an active individual, who worked out five days a week and weighed about 40 pounds less. I wish I could recapture that part of me, the hiker/biker/skier/skater/diver/tumbler/trapeze artist. Where did she go?

Fibromyalgia and chronic fatigue syndrome are a b*tch. Pure and simple. One day you're healthy and athletic and full of energy... then you're on your butt with a constant dull ache from head to toe, unable to sleep more than five hours each night, hypersensitive to prescription meds and booze and cleaning chemicals that never caused any problems before. I get so mad when anyone claims that folks like me are simply "depressed" and need an SSRI and talk-talk therapy. Of course we're depressed! We have no energy, little sleep, and constant pain. Who wouldn't be depressed? And if I could stay awake and not gain weight on the freakin' anti-depressants, I would gladly take them! But living in a drug haze and constantly starving yourself is not an acceptable alternative. And the mood never improves on the damned meds anyway. Flat affect and apathy are not desirable trade-offs.

I've tried for years to get my "old self" back. But I can no longer postpone the inevitable. This condition is not improving, nor is it going away. This is how I am now, and it's time to accept it and move on. Applying for disability feels like a death sentence. But the sooner I accept this, the better I'll manage it. At least no one can claim that I didn't give 110% to try and change it.

The year is almost over. Less than 50 days until Barack Obama takes office. Even with all I've gone through, I feel as if the year just flew by. It's difficult to imagine 2009 is just around the corner.

As for how things have or have not improved since my last post... well, it's been over three months, and I'm not getting better. The weight loss stopped last month; I've lost about 20 pounds total. Which isn't a bad thing, per se. I just didn't want to lose it in this manner. And the two trips to the ER earlier this summer eventually turned into nine trips by mid-October. Fortunately, I haven't been in almost seven weeks, which is a good thing. I attribute this to modifications in my daily routine (i.e., I sit on my butt for most of the day and venture outside just a few times each week for shopping, doctor visits, etc.) But a solid diagnosis has yet to be made, even though several conditions and diseases have been systematically ruled out, one by one, over the past three months.

Thanks to my non-HMO chronic fatigue specialist, I have an appointment with a clinical professor of cardiology at Stanford Medical Center next month. As the differential diagnosis list continues to shorten, one particularly nasty possibility remains: autonomic failure. My specialist has already discussed my case with the Stanford cardiologist; both agree that my autonomic nervous system is screwed up and most likely causing most of my symptoms. Staying horizontal reduces them; being vertical worsens them. Pretty much defines dysautonomia in a nutshell. But what flavor of dysautonomia do I have? And what is causing the autonomic failure in the first place? That remains a mystery for now.


To end this post on another health-related issue... today is World AIDS Day. Even though research has greatly advanced our knowledge of HIV and treatment, AIDS continues to remain a global crisis, particularly in Africa. AIDS still needs our attention and support through research funding and epidemiology education, to reach the ultimate goal of eradication.

While some areas of the planet are experiencing a decline in HIV infection rates, others continue to climb. And while my health problems thankfully do not include HIV, I fully realize the difficult and arduous task of living with life-altering chronic disease on a daily basis. This is why I still participate in SF AIDS Walk every July. It takes me longer each year to complete the 10 kilometers through Golden Gate Park, and even longer to recuperate afterwards. But as long as I can still do the walk, I will.

Fifteen years ago this past September, my brother passed away at the age of 47 from AIDS complications. He didn't live long enough to see wonder drugs like NRTI therapy become the mainstay of treatment for HIV infection. I think of him, and his friends/partners who also died from this terrible disease, on days like today. And I hope that during the course of my lifetime, AIDS will be eradicated from the planet. It is a lot to hope for, but not impossibly hopeless.

Happy Holidays to you and yours.
And a very Happy and Healthy New Year.

What a long strange trip it's been.

I feel like those unfortunate Olympic marathon runners. You know the type: full of hope at the start, energetically keeping pace with their competitors mile after mile after lonely mile... only to trip and fall down HARD on the pavement, tearing a knee ligament or spraining an ankle, thus ending their short-lived Olympic participation for the next four years. My heart goes out to these athletes every time calamity strikes. Totally totally sucks.

I feel their pain. I didn't make it to the finish line either. Four months into my Valcyte treatment and WHAM! My body tripped and fell down HARD on the pavement of emergency medicine. In the past six weeks, I've experienced two trips to the ER, 15 pounds of unintended weight loss, unstable blood pressure, unstable heart rate, continuous abdominal pain and nausea that frequently spreads to my chest and back, excessive urination resulting in dehydration, intermittent low grade fever... the list goes on and on.

Four different doctors are on the case, yet none of them seem to know what's causing this. Best guess is that the Valcyte pulled the trigger on some previously unknown condition. But what condition? That remains a mystery. The medical cops are still searching for more evidence. Who the heck knows whether or not they'll find it.

But the search continues on, poking and prodding around the scene of the crime (i.e. inside ME) until they find something, anything, they can implicate. At least I managed to stall off the "spelunking expedition" (gastric endoscopy) for the time being. My body has this nasty little tendency to stop breathing on occasion when I'm knocked out. The spelunkers don't particularly care for that. Yeah. No shit Sherlock.


So... the grand anti-viral experiment is now officially over. I didn't make it through all six months of treatment. Perhaps four months was enough to eradicate the little HHV beasties. I don't feel any better; the fatigue is still with me. But so are several new symptoms I didn't have before. When they finally disappear, I might feel like this event was worth it. In the meantime, the agony of defeat will have to suffice. The thrill of victory still seems a long ways away.

My first week on Valcyte. Oh, boy! I am NOT looking forward to six months of this stuff: swollen glands, low-grade fevers, heart palpitations, leg/foot numbness, and itching. Lots and lots of itching.

Doc says the drug is working and doing its job. That's the goal. I'm just not thrilled with enduring six months of herx reactions while the little HHV-4/5/6 beasties are dying off. I thought 18 months of Suprax and Flagyl for my Lyme disease was bad enough. This is a whole different ballgame.

And speaking of which, the Giants suck. And suck hard. Just thought I'd toss that in.

It's been several months since I've added any thoughts to this blog. Perhaps I've grown tired with the whole blogger thing. Or I'm just flat-out tired, dealing with life in general. Change has been steadily coming my way, in big ways, since my last entry.

Over the course of the last four months, I've lost my rent-controlled apartment of the past 14 years to an owner move-in eviction, I've lost my part-time job of the past six years when my company failed to renew our program's contract, and I've lost my mom to a sudden and unanticipated heart attack, 12 hours after her hospital team "stabilized" her irregular heart rate, fully expecting to discharge her the following day.

Any one of these events would be enough to emotionally and physically drain any sane individual. But experiencing all three in just a few short months? Some nights, I find myself wondering why I haven't completely crumbled under all of the stress.

I'm still unpacking boxes in the new place, even though the move is only temporary until Labor Day. I'm still dealing with medical claims and financial issues for my deceased mom, while working through my grief. And I'm wondering what I'll be doing in the near future for employment. All the while beginning a six-month treatment regimen for my chronic fatigue with the anti-retroviral, Valcyte. My mother's passing has resulted in her limited savings being re-distributed to me and my sister, which will provide the necessary funds to pay for this promising new "cure" for folks like me.

I've decided to take this expensive medical gamble (to the tune of at least $12,000) because I meet all of the diagnostic criteria set forth by Dr. Jose Montoya at Stanford University, in terms of having the greatest potential of reversing my 12-year bout with chronic fatigue syndrome. I had to quit my full-time salaried position in educational software development over a decade ago, because of this illness, and it's kept me from having the active lifestyle I grew up with and enjoyed until the mid-nineties. And while it's difficult not to get my hopes up about getting my life back, six months from now, at least enough to return to full-time work, I'm also realistic about how all of the "promising" treatments I subjected myself to in the past have not panned out in reversing my disability.

Even getting back just half of the energy I lost would be worth the time and huge expense this Valcyte treatment will require. Not to mention the medical risks and weekly blood testing required to minimize those risks. I have a better-than-average chance of significant energy gains after taking six months of this drug, which is good enough for me to try it.

So... here's to life-altering change, whether or not we ask for it. Stagnation is rarely long-term, but who would really want it to be? Change is life. And death. Not always pleasant, but certainly what defines us and our universe.