Quote of the week:

“They'd have to shoot me to get me back to Illnois."

~Abraham Lincoln upon going to WDC to become president

Saturday, December 29, 2007

OK, I'll Say it: Sweeney Todd the movie SUCKS

Upfront disclosure: I am a Sondheimophile. I even went in with low expectations of this movie. The leads are NOT singers. I like Johnny Depp. But, I'm sorry. Sweeney needs to be a booming bass voice to give it that extra 'ummffth' of forboding and sinister darkness. I thought the movie was more of a caricature--too "Bride of Frankenstein"ish. Helena Bonnam Carter goes FLAT in most of her songs! You're recording this in a studio for fuck's sake! Re-record it and mix/splice it until it's on key through the whole song! I'm so pissed that I pre-ordered the soundtrack.
Antony is some androgenous 'pretty boy', hardly a rugged seaman. But he and Toby at least had good singing voices. I'm really surprised that SS sanctioned this. Really, Stephen?! I do want more of the general public to know your work, as I think you're highly under appreciated and under-rated. But this is not the best example of showcasing your genious. I was not expecting the play to be reproduced on the screen. It would not translate well. But I expected better/more from Tim Burton.

I had a discussion with my friend who is more of a musical snob than I. He liked the movie. He made the argument that it had to be made with big name actors who were not singers, rather than great singers who were not big hollywood names or not get made. My assessment is that it should not have been made then. I can't believe all of the reviewers who have gone orgasmic with their reviews.

Thursday, December 20, 2007

Disease finally pays off! ©

Disease finally pays off! ©

Last Saturday I was part of a focus group. I was contacted a few weeks ago by the Immune Deficiency Foundation (IDF), telling me that the manufacturer of the blood product (IgG) that I get wanted to have a focus group of people who are using/receiving this product. It would last 2-3 hours, we’d get snacks while there, a box lunch to go afterwards, mileage and $150. Was I interested?! Hell, you had me at ‘snacks’! Don’t let this out though, or everyone’s gonna be clamoring to find out how they can get CVID and collect these great dividends!

The focus group was held at a company who does focus groups as it’s business, out near the airport. There were 8 (I think) of us all together. While we were waiting to be taken to “the” room, and filling out the requisite paperwork, I asked, “So, is anyone else here CVID?” All but one of us were. The other was the mother of a 7 year old with multiple ID (immune deficiency, not Infectious Diseases for my medical readers) and autoimmune disorders. IF that doesn’t give you perspective that you’ve got to be soulless. Only two of us were male. The other man was a retired teacher, who I would say was in his 60s-70s.

The experience was very good for a variety of reasons: well, obviously extra cash at the holidays is never a bad thing! But also, it brings to mind the ‘ole shoe parable’. You know, the tale that starts outs, “I complained because I had no shoes, then I met a man with no feet…” There are times when I get pissy and whiney—I know, it’s hard to imagine! Meeting others who have a similar experience or life circumstance as you, helps give one perspective. I would guess that 5 of the other 7 have it worse off than I do. One young woman has to travel to two states away every month for her infusions. It had to do with insurance, her medical provider, and where she was on the “IgG list”. She spent most of the summer in the hospital because she couldn’t get her infusions and got too sick. How whacked is that?! We’re in a major city in the U.S. with major players in the medical arena. She’s force to go to BFE every month? Who knew there was a pecking order on the IgG list—even that an IgG list exists?

The focus group was about a new program that if we registered, we would be guaranteed our monthly treatments, regardless of change in medical provider or location. Not a monetary assistance program, but access to the blood.

Another aspect that was really good was meeting others with the disorder. I have a lot of HIV friends. There is a great supportive HIV community. I have the ID that doesn’t have a built in community. This has left me feeling isolated and a feeling of being on the outside—which is a recurrent theme in my life, but that’s whole series of posts in and of itself, which I won’t delve into. I’m the square peg in the round hole, once again. I have an immune deficiency, but not the ‘right one’, I get treatment usually reserved for cancer patients, but I don’t have cancer. It’s like those tests we took as kids, where you are shown a series of objects and have to select the one that doesn’t belong with the others. I’ve always been that one that doesn’t match with the rest.

The focus group reminded me of my stint at the Rehab Institute of Chicago Chronic Pain Center. Most of my ‘pain-mate’ co-horts were in worse shape than me. Or maybe not, but their pains were different, and maybe psychologically I needed to see them as worse than mine. In retrospect, I bet they did the same thing. We were a very motley crew that one would never intentionally put together, and if one did, one would not have expected us to get along. There was me—gay boy from the farm now in the city; blue collar factory worker; upper middle class suburban retired homemaker/mother; and a street wise woman, my age (40 at the time) from the “rough side of the tracks”, who was already a grandma of one with another on the way. Less polite circles would have called here “white trailer trash”. We had a shared/common unpleasant experience—chronic pain. When you’re in absolute agony (no hyperbole here), status, class and social standing don’t mean squat. We supported and held each other up.

I remember the week I went off the last of the narcs. I was a wreck—physically, mentally, emotionally. I was in withdrawal (and didn’t know it at the time that that’s what was going on with me—that’s one thing they failed to tell me). I’d had a sleepless 3 nights in a row, not only sleepless, but totally wired and thinking I was losing my sanity (what was left of it). I walked in that morning after the third night knowing I looked like absolute shit—again—no hyperbole. J (the suburban homemaker) looked at me and said, “I’m not going to ask you how you are today, I can tell my looking at you, you’re not doing well today.” Then she stood up and outstretched her arms to give me a hug.

While loved ones can empathize with what you’re going through, only someone who’s either walked or is walking that same road truly knows the hell you are living, and what an effort it is some days to literally drag your ass out of the bed. Sometimes it’s that mis-fitted ‘motley crew that’s needed to, as Jackson Browne sings it in “Your Bright Baby Blues”, from THE PRETENDER album (one of the all time best rock albums)
: Take my hand and lead me
To the hole in your garden wall
And pull me through

©wtf/rle (with the exception of the Jackson Browne excerpt)

Tuesday, December 18, 2007

The Last Six Years of Top 10 or Read at your own Risk

If you're reading this, you've either received my holiday card and are really hard up for something to do; or you've unwittingly stumbled upon this. This is the only warning you'll receive. Stop now before you regret it! My annual “Top Ten List” has been on hiatus for the past few years (OK, since 2000). The following will explain a bit as to how I was occupying my time-or how it was being occupied unwillingly on my behalf. As you read, I think you’ll understand why this just didn’t seem to be the right fodder for the holiday update—even for my dark and maudlin personality.

The other title for this would be a take off on the David Sedaris essay from I think, his first book, "Happy Holidays to my family and; friends". Only what follows here is the truth and not fiction. And this is why you've not heard from me in over 5 years. I'll give the bullet points. Should for some twisted reason you want further detail, ask. I’ll consider expounding upon the story. I'll start the timeline a bit before 2001, as it is set-up for what follows"

Randy’s Medical Saga
May ’98 - Shoulder surgery (R shoulder); rotator cuff, acromioplasty, w/ surgeon I didn’t
like, and didn’t want. I was stuck due to an HMO

Dec ’98 - 2nd shoulder surgery, to fix the botched 1st surgery, with the surgeon I originally wanted.

Summer/Fall/Winter ’01 - a lot of pain problems, mainly running along the sciatic nerve of my L leg, resulting from bulging discs in m y spine; series of painful cortisone injections in my spine, producing no relief.

Winter/Spring ‘02 - Referred to the Chronic Pain Clinic of RIC; month long intensive outpatient program, 8 hrs/day, 5 days/week for 4 weeks, went through a bad narcotic withdrawal because they weened me off too quickly.

April '02 - I had to resign from the best job of my career after surpassing FMLA time off, and being unable to return to work.

April ’02 – Began working for the designer/general contractor who did my kitchen rehab, managing his office.

October ’02 - 1st surgery for pilonidal cysts, very protracted and painful recovery.

May '03 - Start job (.75 FTE) at Hospital System in the suburbs --minimum of 1 hour, one way commute. Third week of work, some woman backs into my brand new MINI Cooper in the parking deck of the hospital. This is an omen.

October ’03 – Exactly 1 year from the date of the 1st surgery, the cyst area starts bleeding again, the cysts have recurred, surgeon is concerned it could be cancerous as “they never recur."

I tell my boss & CEO that I am going in for serious surgery, with a protracted recovery and would like to work from home, once I’m able. The CEO replies with, “I can’t believe you’re doing this to us!”—Exemplifying the core ‘values’ and ‘beliefs’ of this great catholic healthcare institution. If getting hit in the parking garage wasn’t an omen, this sure as fuck was. This also frayed that one last strand of any religious belief systems I previously held. My new pet name for this employer is “5RH” for 5th Ring of Hell.

January ’04 - 2nd surgery for pilonidal cysts (not cancerous); recovery was even more protracted and more painful than before.

August '05 - Trained for and completed a 20 mile walk along LakeShore Drive from dusk to dawn for the American Foundation for Suicide Prevention. I raised $2,500. in pledges, and FINISHED the walk--which a was huge victory for me physically and mentally. It was the first big physically active thing I'd done since the pain episode and surgeries. I also lost some of the weight I’d gained from being sedentary for so long, repeatedly.

December ’05 - Slip on the ice, breaking my arm at the R shoulder It’s a surgical neck fracture of the humerus bone—or as the surgeon described it, “think of your upper arm as an ice cream cone, your fracture is where the ice cream meets the cone”. Fortunately, no surgery was required, but missed (another) 7 weeks of work (AND PAY).

March '06 - After another really bad bronchial infection, unable to see my MD, and see the PA at the practice, who begins to ask different questions, resulting in a battery of blood tests. I am diagnosed with a condition known as CVID-Common Variable Immune Deficiency. My body does not produce antibodies to fight off infections. It is a congenital disorder that is usually diagnosed as a child, or in early-mid 30s (which is when my bad, chronic bronchial and sinus infections started). I now go in once a month (for the rest of my life) for infusions of IgG (a blood product).

I now have an unnatural (but not irrational, imho) fear of surgeries, as it seems it takes 2 times to get it correct; and of December, as it historically has not been a kind month to me.
~end of the shitty part~

October '06 - Begin new Job - which I love. I no long work for assholes! YAY ME!

2007 was a rough year health-wise for the bronch and sinus infections. I was borderline pneumonia at one point and close to hospitalization. But comparatively to the previous 6 years, not quite as hellish. I took 4 trips this year (all work related, but was able to squeeze in some fun. NYC was a favorite. I was there the weekend of the Tony’s and being the work diligent fool that I am, I passed up on a ticket to the Tony’s with my friends Eric & Joel, who met me in NYC for the weekend.) I was able to feed my anemic Broadway fix with 6 shows: Company (FABULOUS!); Journey’s End (Incredibly and numbingly moving); Grey Gardens ( I will never forgive Christine Ebersole for backing out and sticking me with the understudy for the performance I saw the night before the awards); The Drowsy Chaperone (fun, cute show); Spring Awakening (I saw this the night AFTER it won all the Tony’s—it was a theatre experience unparalleled to anything I’ve witnessed before. The energy in that theatre was palpable! Three curtains calls and at least a 10 minute standing ovation! It compensated somewhat for Grey Gardens, but I still will never forgive Christine Ebersole; and The Fantastiks—off Broadway. Spring Awakening was by far the high point. Great music, great story (based on a German play from the 1860s. It’s uncanny how although things change, they remain the same. The same issues of adolescence/young adulthood that existed then, exist today. It was quite the provocative play, and banned/censored, or re-written-edited. It’s just like the Bush Administration of current history.

Also in ’07, I did something I’ve been wanting to do for a long time. I got a tattoo. (DON’T TELL MY RELATIVES!) It’s a Latin phrase that has been my mantra through much of the past 10 years. It’s between my shoulder blades on my upper back and reads, “non illegitimi corborundum est”, the English translation is “don’t let the bastards grind you down”. I consider my ‘war badge’ for getting through the aforementioned.

Wednesday, December 12, 2007

Dreaded Day of the Month

Tomorrow (Thursday) is my monthly ‘dread day’. It’s my monthly IV IgG infusion. I dread this day every month. It’s not the infusion I dread. It, in and of itself is not bad. It’s mild discomfort at the most (usually). What I hate is getting started. The gods, in their sick and twisted humor, gave me a disorder that requires monthly IVs, while giving me tiny rolly veins. Very few medical professionals have ever been able to get an IV or syringe for a blood draw on the first try. It’s usually twice, the record being 4 the last time I had surgery at a hospital I had not been to before. The medical practice I go to now, has 1 med tech (Travis) who has an almost perfect record with me. There’s one nurse (O), who is pretty good. When I first started the infusions a few years ago, the head nurse (H) who was determined he was going to tap my vein or die trying. It took three tries. The next month, I said, “You get one chance. He blew it. It took about four months, and me finally insisting on Travis. THere have been a few new nurses or techs in the intervening months. ONe time after 2 people, 3 stabs, I finally insisted they find Travis. He said, "Ask for me." I said, "I do! THey won't get you until after they've all tried. Since then, I pretty much get him. A few months back, he came in and, said, "we were all fighting for you in the back. I won." That made me so happy. One, that he considered getting stuck with me as 'winning'. And, to be totally superficial, he's so damned hot. He could multiply stick me, and I wouldn't be pissed like I am with the others. We have a good banter back and forth. He has a sense of humor. One time he was inserting the needle. I never watch the needle go in. I don't freak out by it. I just don't like to see it go in. Once in, I can look down, and help tape it down and secure it. Anyway, He said, "I'm done." I replied, "Wow, I didn't even feel it go in. YOu're good! His retort, "Tell that to ALL the men!" Travis could 'stick' me and I wouldn't protest.
So, here's hoping I get Travis tomorrow. He makes the infusions less sucky.

Sunday, December 9, 2007

Great Cancer Post

I read this great Cancer posting: http://www.huffingtonpost.com/matthew-zachary/the-cost-of-living-no-cu_b_56003.html

from this blog http://nosugrefneb.com/weblog/2007/12/07/cancer-research-blog-carnival-4/#comments by Ben, an MD/PhD student, who's site I stumbled upon a few months ago.

Cancer patients, survivors, and loved ones will find the first posting very good reading. The scientists/physicians among you will find the rest interesting. I think Matt has the perfect post script in his response, "STUPID CANCER".

MUPD: if you're reading this, please sharing Matt Zachary's post with MB. Tell her good thoughts and karma are coming her way. ~YGS

Wednesday, December 5, 2007

Post Script (1)

I sent am email to 3 of my former colleagues and friends (they're not former friends, they remain friends) from 5RH (5th Ring of Hell) to let them know about the accreditation good news. Following is part of the reply I received from A:

"...Good for you, Randy! This is a full circle moment for you -
you have proved yourself through programming, and now
you got a super review! Now that the documentation is
in hand, I hope they continue to recognize your fine work.
After spending time in this crazy system, I'll bet you were
questioning your abilities. Now you know for certain that
it wasn't about you!Congratulations! ..."

This was incredibly kind, and the sentiment wasright on the money. It's the nicest and best thing someone could have said. Especially someone who knows CME and the process, and my life before this current position. She knew how miserable I was and how completely un(der)-utilized and un-appreciated I was there. I do have one correction, though. We got a good review. It wasn't super. There are times for all of us, when we go through something, and the only ones who can fully understand or appreciate the significance are those who have share that (or previous/similar) experiences. Cognitively, I know I'm good at what I do. When others play continually beat you down, that kind of bullshit plays with your psyche and you DO begin to doubt yourself, even when you know it's bullshit. A corrolary to the addage: "Living well is the best revenge." -- "Doing well is the best revenge!" I"m succeeding at the things, I wasn't allowed to do in my last job--the very things I was supposedly hired to do. Go figure. They pissed away someone who could have done a lot of great things for the organization. What a loss for them. Idiots.
Every little and big success, every abstract accepted is a great way of saying "FUCK YOU" to my former employer. "Doing well IS the best revenge!"

I was there for over 3.5 years. But I'm not there anymore.

Life is good.

Tuesday, December 4, 2007

(S)cum sucking pig

The Advocate Online has this latest story about Senator Larry Craig. Eight men have come forward alleging they've had sex with him. Jesus Christ, Senator, have you no shame?! Resign already. For all of the anti-gay legislation you helped pass, karma's a bitch, you hypocritical piece of excrement.

"Eight men say they either had sex with Sen. Larry Craig or were targets of sexual advances by the Idaho lawmaker at various times during his political career, a newspaper reported Sunday.
One of the men is the former escort whose allegations disgraced the Reverend Ted Haggard, former president of the National Association of Evangelicals, the Idaho Statesman reported. ..."

Full story is in the link.


Monday, December 3, 2007

The stars are aligned for me today...

…And the Gods are smiling upon me. I called today and FINALLY got the word on our accreditation results. We got 4 years, full accreditation, with no interim report. I am shitting happy bricks. Our review/interview was in early June. The physician who was the lead reviewer for us was, well, how do I put this? Oh, I know--A complete f#¢king a$$hole, who had an ax to grind and we were his honing stone. The co-reviewer spent the whole interview trying to mediate and facilitate between the Dr. and us. Even though you know when you’ve done well, when someone else holds the outcome in their hands, you don’t always know how it’s going to turn out. I will get the official ‘piece of paper’ in the mail later this week that has all of the details. But 4 years, full. I’m happy.

Additionally, I received notice today that an abstract I submitted to present at a conference in May was accepted. Vancouver, BC, here I come! If I didn’t have to drive out of town tonight, I’d be sipping some good Highland single malt scotch in celebration. Damn, I’m so frickin’ hot, I’m on fire today!

At Thanksgiving, I got a cold from my nephew. My colds usually turn into the nasty bronch infections. For the first time in 15 or more years, it didn’t! Are these $8K monthly infusions of IgG finally working after two years?!? Woo Fucking Hoo! Let me say it again, WOO FUCKING HOO!! Has the December curse finally vacated?