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

Sunday, July 27, 2008


July 28, 1997 (which was also a Monday) was the day I brought home Euckie the Wonder Dog. I had found her, and she selected me on the Saturday, when I went to Anti-Cruelty Society. I had been going on Saturdays for a number of weeks. Every time I went, it seemed that the dogs had already been ‘reserved’ or adopted by someone else.
That weekend, a friend from downstate was coming up to visit me. Rebecca (or Reb) was actually from my hometown, Bumblefuck. But that’s not how & where we became friends. She was a number of years behind me in school. Her older sister was a freshman when I was a Senior. But she worked at the hospital that I worked at—my first CME job. She worked in PR. Different things at work had us crossing paths, and we became friends.
Anyway, Reb came up to visit. She went with me early on Saturday morning to Anti-Cruelty. We took then otherly named Euckie out to the play area. She was very timid, but longing for affection. She had the longest tongue. Reb commented, “Lesbians would love her.” We seemed to be compatible. I went to the volunteer/staff person. Told her I wanted this dog. IN all of the previous times I’d been there, there was not mention of ‘necessary’ items for adoption, one of which was a copy of one’s condo’s by-laws providing evidence that one’s building allows dogs. Also, they wouldn’t ‘hold’ her while I went back to get a copy of my building’s by-laws. Reb said she would stay with the dog while I went back. I do so. I return. There’s a different volunteer to complete the paper work this time. She NEVER asked for the freaking by-laws! Had Reb not been with me, I likely would have lost the chance to get Euckie. Reb helped me come up with her name. As I used to be a florist, I determined that my dogs would always be named after plants. Now I worked in healthcare. The dog was part Australian Shepherd. Eucalyptus is a plant with healing properties, native to Australia. So, Eucalyptus it would be, but shortened to Euckie.
I have been watching that new dog show on CBS about Dogs and their human companions. It's very bittersweet for me to watch. Euckie was very possessive of me. She did not like sharing me or my attention with others, especially other dogs. While we would not have gotten far in that contest, she was “America’s Greatest Dog” in my book and always will be. I was recently talking with another dog person, who was talking about one of his 3 dogs. He said, “He’s the one in a lifetime—you know, that perfect dog, who just ‘fits’ with you. You know that you’ll not ever have another dog like this—this perfect.” Yes, I did know. I had my ‘dog of a lifetime’. She was the best. She was Euckie. She was my protector and companion for almost 11 years. Happy Anniversary, Euckie.

Thursday, July 17, 2008

Ass Whuppin'

I now have 3 (or at least parts of) posts written, that I’ll probably not post. This is primarily because they are too whiney and bitchy, upon re-reading. And, quite frankly, when I see shades of the less pleasant traits (or words) of my mother glaring back at me written in my own hand, it scares the bejesus out of me—the things I vowed I’d never do nor be like ‘when I grew up’.

That being said, I’m not currently feeling bright and cheery—not that these adjectives are frequently attributed to me. I’m in a slump. I’m discouraged. I’m frustrated. I’m pissed. I just finished week # 4 of being on anti-biotics, and just got a ‘script for a new one—for 3more weeks. This fucking sinus infection is still kicking my ass—or kicking the snot out of me to be more literal. I am reminded of one of my favorite books that I read a few summers ago. I bought this book for the title alone, and was NOT disappointed. The title: “Another Bullshit Night In Suck City: A Memoir” by Nick Flynn. I laughed, I cried. It was a good—make that GREAT read. I recommend it. It’d be a good summer beach read.

I DO try to be mindful that it could be worse. There are people in much more dire straits than I. I remind myself of that. It’s sometimes hard to keep that in focus when the back of my right eyeball feels like a punching bag. Chronically feeling like shit just sucks. It sucks poorly. I just turned down an invitation from my friend Mark, to a cookout, because his out of town guest is HIV positive, and I don’t want to risk exposing this sinus infection from hell on to someone else who is immune compromised. Mentally, being in a social setting would, I’m sure do me good. But feeling like the carrier of the black plague at the cookout would not. So, to try to be less like the me in the first paragraph, I’m listing things I’m looking forward to:
The new season of Project Runway
Massage scheduled for Saturday (legit-not the ‘happy ending’ variety, from my friend Louie, who is an exceptional MT—he’s like a PT/MT
I’m seriously thinking about another tattoo—I just have to figure out what I want this one to be—I know I want another Latin quote, to follow suit with the first one. I have to decide which one from my list—maybe I’ll post the options here for vote and/or comment.
Of course there’s more, but it’s a start.

Wednesday, July 16, 2008

Everything but the Kitchen Sink

In lieu of the kitchen sink, I’m including a pic of my kitchen floor. Why? It’s photographic evidence for my Mom, that I do indeed know how to clean my apartment and mop a floor. Not only did I mop, but I stripped off the old wax and re-waxed the floor. This is an event that does NOT occur with great regularity. I even took apart the range top and scrubbed it, and cleaned/polished the stainless steel a few weekends ago. I designed my kitchen and even the pattern of the floor. As a narrow, galley kitchen, placing the floor tiles on the diagonal with the room, gives the illusion that the room is wider and longer than it is. The ceiling I installed (which you can't see, obviously) is a pressed tin ceiling. I tried to meld the old 'feel' of the building/apartment with creating a new, functional kitchen .
The only good thing that occurred from my various surgeries, broken bones, etc., was that when my parents came up to help me out, my Mom would clean my apartment from front to back (with the exception of my bedroom, which was an unspoken mutual agreement that she did not want to be rummaging around in my bedroom. My Mom is generally appalled with my housekeeping (or absence there of) attributes. My apartment isn’t so much dirty as it is messy. Enough so at times, that my gay card could be revoked. When you have chronic health problems, mopping the kitchen floor every week isn’t at the top of the list. I’m a packrat. In that aspect, I am so much my Father’s son. Sometimes I feel like I got all of the negative traits from both each parent, and few of the good.

The view from this pic: I am standing in the back door, off my apartment, looking in. You will note the documentation of my predilection for the shades, tones and hues of purple in the floor and walls. I did the gut rehab of my kitchen BPC*. I have the chef’s kitchen (as much as one can have in a galley kitchen in a turn of the last century classic Chicago building), that my Mom and my Aunt Alice always should have had. Once I had my new kitchen, I had all these plans for throwing fabulous dinner parties and entertaining guests. The Universe had other plans. If I were doing it over today, given the same circumstances and limitations, there are very few things I'd do differently.

Sunday, July 13, 2008

Word du Jour: Trochanteric

As in bursitis. It’s also the diagnosis of the day. Or, GDad, quite literally a PITA.
Thursday was my monthly IgG infusion day. Given the history of the past few weeks and new infirmities, I wrote out my list for things to go over with Dr. K. Tuesday, my R hip (the ‘good’ leg) started hurting—badly. On the pain scale, it progressed to a 6/7 by Thursday. Unlike the pain in my L (bad leg), I knew this was NOT nerve related. It was joint related. I suspicioned that it might be related to my two big bike rides over the 4th weekend.
When the nurse comes to get me to set up my infusion, he takes me to an exam room that is freezing. It could have doubled for the morgue. Once he got the needle in (one stab!), I ordered my own blood tests. I told him to take a blood draw before setting up the IV, that I wanted to get trough levels of my IgG and sub-classes. (thanks, M). He got the vials and the equipment for the blood draw, then set up the IV. I asked him to get me a blanket, as I knew that once that ice cold saline and IgG started coursing through my veins, I’d be freezing in the morgue room.
Later, Dr. K. comes in. “How are you today?”
“Shitty. Neck glands are still swollen. The ear is no longer hurting, but I still feel like shit, and now my R hip hurts like hell. I’ve ramped up my oxy after months of weaning down. I’m NOT happy about that. It’s screwing with my sleep. I’m cranky and bitchy—more so than my usual...”
He checks different things, and comes up with the diagnosis of trochanteric bursitis. And, it is due to the bike riding. God f#cking dammit!! He prescribes a NSAID, and tells me not to ride the bike until it clears up, and then take it easy and not do long rides. So, I finally find something that isn’t mind numbing and makes me want to jam dull rusty needles in my eyeballs like the freaking elliptical or treadmill at the gym and it causes new infirmities. So, no bike rides along the lake this weekend.
I did go to the beach this afternoon, and rode my bike there. It’s not far. We’ll see how I fare with that. It’s late. I’m tired. I’m outta here. Hopefully, I’ll get to the focus group update tomorrow or early in the week.

Monday, July 7, 2008

The Greener Grass

It’s long been on my mind, but something I’ve been reticent to verbalize or ‘writerize’ about my diagnosis. My guess is that other people with chronic illnesses/conditions/diagnoses think similarly in regards to their own situations, when thinking about or talking to “the great magician in the sky”, as George Carlin used to say in reference to a god.

I wonder what it would be like if I could ‘exchange’ my CVID for something else. When I play this fantasy game in my own mind, I’m usually trading it for HIV—hence my reticence to talk/write about. Let me state for the record, I’m NOT a ‘bug chaser’.* (see first footnote.) Nor, do I advocate the practice.

My thoughts tend more to the philosophic ideals. How would my life be different? Do diabetics dream about trading their insulin injections for something they deem less intrusive? (This is all conjecture, and since it’s my health fantasy, I get to romanticize it the way I want.) In this scenario, my overall health is actually better, because my doc(s) treat a lot more cases of HIV than CVID, and know how to manage it (the disease) better. This is confirmed by the knowledge that my friends with HIV have a better overall health than I do. The other thing, (and this is the one that makes me envious) is that I’d have an already built in community of people like me, with more commonalities that the disease itself. There are plenty of services, support and social groups for my HIV friends. This ties in to a recurrent theme of my life of feeling like I’m always on the outside, looking in. It’s something that is a very common theme among gay people. From our earliest memories, we (or I) always knew that I was somehow different from my brothers, from my classmates, from everybody. And, even though I couldn’t articulate what that difference was for a long time, I somehow knew it had to be kept “secret”. It falls in line with the sense of the “Imposter Syndrome”. Or to analogize this to another group, my friends who are in AA, have that built in community of people like them. Again, I have no intention of abusing ETOH to get a membership card. Given my preponderance of constant anti-biotic use, I would not be able to over drink with any consistency, anyway . But then, if I had that particular disease, adherence to abstinence while on antibiotics would most likely not be in the forefront of my mind.

An additional aspect that frustrates me is that I used to do my share of volunteer work for HIV/AIDS education and prevention & services to people with HIV. That all stopped when I had my first shoulder surgery, which I believe was the catapulting event that was the beginning of my overall health decline. That was followed by the chronic pain problems (which is a completely different chapter). Aside from lacking the energy to be able to commit long term, I’ve re-focused my energies to learning about and working on causes related to CVID. While important and a necessary move on my part, what I do in these regards, impacts fewer people than did my HIV work. It also somehow feels ‘less pure’, as now my motives are now more self-serving.

When I’m able to joke about it, which is most of the time, I say this is just another aspect of how dyslexia has permeated every aspect of my life.** (see second footnote.) Even my body/blood got the letters mixed up. Gay men are supposed to get HIV, not CVID. But then, I've never been one to follow convention. The ironic part being all the years of worrying about HIV, and doing my semi-annual HIV tests (out of habit, not necessarily activity), it didn't occur to me or my various healthcare providers to look at other possibilities, until two and a half years ago. Well, that's partly untrue. For nearly 13 years, I kept saying, "There's something you're not figuring out. Something's not right. I shouldn't be getting sick all the time." And, after all those years, it was the PA who finally diagnosed me correctly.

I close with no answers to my contemplative fantasy disease exchange, but more questions, which is frustrating. As the Baker’s son, sings in the finale of Stephen Sondheim’s Into the Woods, “No more questions—please. No more tests... No more curses you can’t undo…No more questions, please. Close the door.—Just No More.” Just no more—those three words speak volumes. I believe that most of life’s ponderings can be summed up by and/or found in one of Stephen Sondheim’s musicals/songs. I would say Into the Woods is my favorite Sondheim, but I can’t. That’s like parents choosing a favorite child (although mine did, --shocker! It wasn’t me). All of his shows provide a new/usually skewed—in a good way—outlook. (I wish they would do a revival of this show on Broadway. I’ve only seen this one by smaller non-equity companies in smaller venues. I’d really like to see it on the Big White Way. Although I didn’t get there this year to see Sunday in the Park With George (another Great Sondheim show). But I digress.

*term in the gay community for an HIV negative man who seeks out and has unprotected sex with an HIV positive man with the sole intent of contracting the virus. Some view it as a ‘right of passage’ to becoming a MOTT (Member Of The Tribe). There’s an alarming amount of data indicating the widespread practice of this, especially among younger gay men who never have had to witness the decline and gruesome deaths of their friends who died from AIDS complications, before the advent of Protease Inhibitors and all the subsequent HIV meds.

**the other aspect being that I did not come out of the closet until I quit being a florist. I got that backwards too.


Sunday, July 6, 2008

Meet Gary Fisher

Pre-script: This post was written July 5. I didn't get the pic until today (July 13), and thus didn't post until now..

I have a new “Gary” in my life. Back in May, I wrote my good-by message to Gary MINI Cooper – here--> http://randomthawghts.blogspot.com/2008/04/so-long-gary-with-some-regrets.html.
Meet Gary Fisher. He is my new set of wheels/transportation. One of the things I planned to do with the sale of Gary Cooper was to purchase a new bicycle. The brand happens to be “Gary Fisher”. Having the complete non-sports gay gene, I don’t know, but I think Gary Fisher (the person) was/is some famous bicyclist. Between traveling, and being sick, I hadn’t had much opportunity to ride Gary. Last weekend, I finally got out and rode the Lake Shore Drive bike trail. (Over the 4th of July weekend, I took two good size rides.) My hope is that it will provide the additional cardio needed to lose the last of the gut. The LSD bike trail is another one of the many reasons I HEART Chicago. The current Mayor Daley has done a lot to make Chicago a bike friendly city. In addition to abundant bike trail, the buses of CTA have bike racks on front of the bus, and you can take them on the el to travel to other bikeable destinations--even more reasons to HEART Chicago.

Serious Chronic Illness* pays off, Once Again!

Last December, I wrote a post about being asked to be part of a focus group regarding CVID, (the illness/ diagnosis I have).
*–sidebar—I never quite know what to call it. Disease doesn’t seem to fit, as it’s not something communicable, and not something I caught from someone else (other than possible in utero); ‘condition’ doesn’t really fit either; which leaves me with illness, but that doesn’t seem to fit either, because it’s actually other illnesses I get (bronch, sinus, (and now apparently ear infections). So, I end up calling it ‘my diagnosis’. What do I call it? Any recommendations, Dr. Mark?
Anyway, I had an email from the Primary Immune Deficiency Foundation, that there was going to be another focus group for Immune Deficiency (non-HIV) patients who receive infusions of IgG. Once again, it pays an honorarium and mileage. However, there was no mention of snacks this time. If I could get one of these gigs every month, I could start breaking even on my monthly meds co-pays at Walgreen’s!
The focus group is next Saturday. I’ll give a report after it occurs.

Thursday, July 3, 2008

Seriously Universe, WTF?!

As noted in the previous post, I was back at my Dr.’s office and got a shot and put on oral antibiotics for the 4th sinus infection of the year. A week into this course of meds, my right neck lymph gland is swollen, and right ear begins to hurt. Tuesday night, I went to bed at 7:30, because I was exhausted and felt like shit. I NEVER go to bed that early (to sleep). I go back yesterday (Wednesday) to my Dr. I’ve now got a fucking otitis (outer ear infection). Onset occurs AFTER a week of being on antibiotics. WTF? So, it’s another shot (on the right ass cheek this time), and extension of the oral antibiotics. Unbelievable. So, I ask if these two infections are related—did the sinus infection migrate to the ear. No. Should I make an appointment with an Otolaryngologist (ENT-Ear Nose Throat) doc? Yes, we should consider it, but not until I’m off the antibiotics. HE wants to monitor this, and see if it (sinus infection) will stay away—or see how long before it strikes again. I ask Dr. K, “ WTF? —I thought these monthly infusions of IgG were supposed to keep from getting these infections so frequently. It doesn’t seem to be working. It seems like I’m getting sick as frequently if not more so since I started them over two years ago.” He says we might try going to every 3 weeks, instead of 4-5 weeks. He’s done that with another patient, and it seems to have helped him. I ask how they determined the IgG dosage? Is it a guess? Should he take blood and see where my antibody level is to monitor it? It seems now would be a good time, as it’s midway point between infusions. “Good question”, he replies. He’s not sure, but will go do a search to find out. He returns 15-20 minutes later. He can’t find any research or data doing a quick internet search, but he’s going to investigate more. He quizzes me about being depressed. “I’m not depressed, I’m pissed off.”
“About what?”
“About being sick all the goddamn time.”
I know the signs of depression. I know the signs in me. When I’m clinically depressed, I have low to no libido. Without going into details, this is currently not an issue. It’s definitely not an issue at this time. I’m just over feeling like shit so often.