Back among the Living

I am finally back among the living. This last bronch infection really beat the shit out of me. Each one seems a bit worse than the last. Coughing up bloody chunks of lung just ain't fun.

And even when I'm sick in bed, life goes on--the good with the bad.

The good: Last week, I became a great uncle for the second time, against my protestations that I'm still too young to be a great uncle. My niece had another beautiful baby girl. Both are healthy.

The bad: When I was at my parents' after Christmas, as always, I went to see my Aunt Alice, Mom's oldest sister, who partially raised my Mom, so she's always been more like a Grandma. Her Alzheimer's is progressing rapidly. It's hard seeing her decline. She knew me, which has been a fear of mine for the past year or so, since I don't get down to see her more than 2 or 3 times a year. She's been in a Seniors assisted living facility. Other residents said of Aunt Alice, "we can tell she WAS a really caring compasionate person." Hearing her referred to in the past tense when she's not dead is strange.

Monday she had to go to a nursing home, after a short hosptial stay last week. This fucking disease is a theif. It has stolen her life. Antithetical to the last sentence of the previous paragraph, She is no longer alive. There's no quality of life. She's a body that is rapidly losing its soul. IF there was a god, 'he' would take her to her glory, as the bible thumpers are wont to say. She worked hard all of her life. This is not how it should end. It should have ended before reaching this point.

My love of cooking, and skills thereof are a legacy of my Mom and Aunt Alice. She could cook for 3 to 300. She ran a restaurant when I was little, and later was the cook at the my grade and high school cafeterias before she finally retired, to care for my uncle, who had Alzheimer's before he finally died, not knowing any of us. Fucking cruel universe.

For those keeping score at home

...Get out your calendars, and magic markers. Start the office pools. I had nearly two full days of health in the new year before getting sick. My first bronch infection of the year arrived on January 3rd. I'm now coughing up chunks of lung. I figure tomorrow and Wednesday are going to be the 'peak' days, when it's at its worst. At this point in history, the anticipation is almost as bad as the actual peak of sickness...almost. My next infusion isn't until next week, so I should be at a decent IgG level--especially since this hit last week. I better be in good health when I go to San Francisco at the end of the month or I'm going to be extremely pissed.

I was not able to get in to my PCP today, so I'll see him tomorrow, proably get a shot in the ass, and put on oral antibiotics.
I'm enough of a regular now, that I have the little playful banter with much of the staff. If "T", the hot little tech comes in with the bottle and syringe, I ask, "Do I need to drop trou?"
He says, "yes."
I reply with, "OK, but you first."
The ice is broken. If only dating were that easy.

Not Hypochondria

Sometimes I wish the illnesses were JUST in my head—that I was somehow imagining it. After 3 days in bed, vacillating between chills and sweats, soaking the sheets, I saw my dr. today. (I called Monday morning, this was the first opening and I didn’t call the nurse to bump me in this time). I have fucking strep throat—AGAIN! Second time this year. This isn’t on the list of approved illnesses for CVID. WTF?! Seriously, WTF!? I’m so pissed with myself that this one didn’t enter my radar as a possibility, and I didn’t figure this one out. Two weeks ago at my last infusion, my throat was scratchy. He did a strep test then. It came back negative. So, instead of being top of mind, my dyslexic brain erased it from the possible options.
This time, my tongue scrape solution barely hit the blotter before showing the + sign. Strep tests are now like pregnancy tests (not that I have any experience with those), Plus you don’t piss on the test strip. Other than that, they’re similar. But, they take a swab from the back of your tongue, mix in a little tube of solution, pour the tube onto the little holder and wait to see if the + sign shows up. Instead of being knocked up, you have strep…and it doesn’t last for nine months.
So, I was right. I’m really sick again. Sometimes being right sucks shit. I prefer my sick when it's combined with twisted.

At least I was having fun when it happened this time

At least I was having fun when it happened this time

I have written about various WASTHTR events in the blog, especially in the health arena. Though, I’ve not written about breaking my arm while walking my neighbor’s dog 3 years ago, nor how my physical therapist broke my ribs once in a therapeutic intervention gone awry, nor the breaking of my ribs in a car accident when I was in grad school. Suffice it to say, in all of these events , I was NOT having fun prior to the bone snapping activities.
I now have a WASTHTR in which merriment was being made.
Friday night I went over to the apartment of a new date for the evening. We were having a few beers, talking, watching TV. The evening progressed to a more amorous level. At one point, he was standing behind me, and gave me a big bear hug. I should note here that I am not a man of large stature. I’m 5’5”. I’ve lost over 50 pounds over the past few years and weighed in at 134 last week. He is not a large man, either. He’s under 6’, (and 160-180, I’d guess.) But he is built solid, and strong. HE gave me the vice grip bear hug, and I felt the rib(s)—mine, not his pop. He misconstrued my groan as one of pre-orgasmic ecstasy and not one of pain. Not wanting to ruin the moment, nor freak him out, I allowed him to continue with this misperception. Besides that, I was having a really good time. I thought it was probably a minor dislocation. We continued our play. I won’t go into detail.
I woke up Saturday morning, hurting a bit. I went to the gym—I did my cardio. I went to the butterfly press machine. OUCH. My left rib cage really hurt. I dropped the amount of weight and persevered. I went to the free weights. I lie down on the bench, dumb bell in each hand in an outstretched cross formation. I try to lift the weights up in the air. OMG, the pain was sharp and shooting. FUCK! I could not raise the barbell. FUCKFUCKFUCK!
I shower, leave and call Louie, my massage & physical therapist.
“Lou, I need to see you. I think I’ve popped a couple of ribs.”
“WHAT?!”
I think I’ve popped a couple of ribs.”
“How?”
“Let’s just say I was having a good time when it happened.”
He’s out of town for the weekend. He can see me Monday night. I go over. The lightest touch to my left ribs nearly sends me through the ceiling. He confirms that it’s real. That it’s not in my head—that I’ve popped and/or bruised 2- 3 ribs. I am to take it easy—and wait it out. There’s really nothing to be done for rib injuries other than wait it out. I've discovered one disadvantage to losing a lot of weight. You also lose the cushion and padding that adds a layer of protection. At least I had fun getting injured this time. ©wtf/rle

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.

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.

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.

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.

©wtf/rle