Too stupid to die…

It’s hard to take pictures when your hands feel like they’re in boiling water and you can’t pull them out. And it’s really hard to take a picture that isn’t blurry from shaking and is also more or less composed. This the first one in well over a month I’m proud of. It’s also – I hope – a sign that I’m finally moving a little bit in the direction of “nominal” and praise the deities for that.

Poles in fog, McLaren Park

The fog faded the colors, not the computer.
Half an hour later everything was technicolor in sunlight
as the fog withdrew to the Pacific.

This happened yesterday. The only info you need to make sense of it are a) I was in the hospital for a few days about two weeks ago due to high fevers following an endoscopy (a look down the throat), and b) when they were looking, the docs saw something that concerned them,  declaring it Must Be Removed. I agreed. Now if only I could get it done…

Rather than polish it up and risk losing the, er, spontaneity, here’s the eMail I wrote to my friends.

Went to ENT (Ear/Nose/Throat) clinic today to get the thingy in my throat removed. The following happened:

1. Doc saw me, said situation is exactly what the docs in the hospital had said two weeks ago: growth on pharynx, probably papilloma, needs to come out. Said he’ll do an excisional (right word?) biopsy removing the whole thing (unless it extends into my brain or some other inconvenient spot). I said hooray for that! (more…)

This post isn’t likely to make much sense. The pain caused by the autoimmune war my body has declared on itself is so over the top I reluctantly downed half a Norco (Vicodin with less liver-destroying Tylenol in the mix) to dull the fire then for good measure threw in the prednisone I skipped yesterday – prednisone barely keeps Eddie’s War from going nuclear – as I had to hold still for an MRI so the docs can take another stab at figuring out what exactly this dermatomyositis/ GVHD/ mess of a condition might actually be.

Got that? (more…)

Looking up…

…at a sculpture along San Francisco’s Embarcadero.

Nobody sees a flower, really, it is so small. We haven’t time – and to see takes time, like to have a friend takes time. –Georgia O’keeffe

I saw a man on a street corner staring up with such intent he seemed to be studying for an important exam. I think he was.

In his hand was a camera, a Canon EOS, and the objects of his analysis were the powerlines overhead. Or he was noting the angles and shadows of the rooftops on the buildings nearby. Or perhaps it was the textures of the gray clouds left by our last small storm that fascinated. If his exam was an advanced one, he was considering all three.

The man was in the midst of what I’ve come to call the seeing – the act of poring over something, point by point, detail by detail, trying to figure out what is there. What is really there, not the small and disconnected bits we register in our day-to-day and then claim – foolishly – we’ve actually seen something.

(more…)

In my whine about my latest medical issues, I mention chronic pain. Chronic pain is different from regular pain in the same way a bad mood is different from a blackshade depression. A beloved friend who knows more than most about chronic pain sent me the following. She gave me permission to reproduce it here.

Chronic Pain: A Rant by RLL

It isn’t fair-but it doesn’t give a shit about that.  It just hurts.

Most people don’t know you’re in pain.  They think you’re just in a bad mood or are just being bitchy or difficult and hard to get along with. Some still consider it malingering — a sign of weakness.  Especially when pain starts canceling plans. Others take it personally – if you loved them you’d still want to do this or that like you used to or promised you would.  It’s just a lame excuse.

Chronic pain and its side effects don’t show really, at least not like acute pain.  If you don’t have a body part split open, are not dripping blood, have something wrapped up, slung up or taped down, it can’t really be all that bad and you’re just being a big baby.  You’re just making excuses to get out of something.

(more…)

There has got to be a maximum number of diseases and disasters, conditions and catastrophes that one human body can handle before it just gives up and dives for the worms.

Surely two life-killing viruses, cancer, a liver transplant and all their attending “issues” is enough for one existence. You think?

Guess not.

This past month I’ve entered the brave new world of autoimmune disease. A couple of choices present themselves: one is called dermatomyositis, which is tthe operative definition at the moment, and it is NOT your friend. If you must read up, here’s a link, but don’t go there if you’re the least bit susceptible to internet-based too-much-medical-info-itis. My other option is graft versus host disease – GVHD in the jargon. This happens when a bit of the donor’s immune system gets into the recipient’s during transplant, and apparently requires (in non-marrow transplants, anyway) the recipient to have a weak immune system. Congrats, me! I win again!

The next doc who says to me, “Oh, but the odds are so small that such a thing will happen!” gets taken down. (more…)

…that happily hands out bottles of nasty narcotics, including morphine, but denies coverage for celebrex, the only anti-inflammatory approved for transplant recipients, citing as the reason that said transplantee (me) is two years too young (!) to meet their formulary guidelines.

Go, HealthNet!

Go, America!

Ok, I’m getting sentimental here. But I’ve opened yet another door of the Medical Winchester Mystery House – an autoimmune condition this time – and I’m in need a bit of sentiment. I’ll write the gloomy stuff later, but right now…

I’ve posted (and posted and posted) about Otto, my dog. I’ve said less about my ex-cat (ex-mine that is, not ex-feline), Orion. Orion now lives with a dear friend, partially due to my medical adventures, but he’s still a frequent visitor.

More important, Orion and Otto are… well, it’s kind of hard to say what they are to each other: lets just call it a really really strong bond. Orion was here first, and when Otto arrived as a 7 week old puppy they fast became inseprable. Breaking them up was one of the sadder things I’ve ever had to do. It’s been sadder yet for the two critters.

During Orion’s last couple of stay-overs, I started taking notes on life with a cat and dog. Anyone who lives with both knows that the usual cat rules and dog rules – and your life – change erratically.

So here are the notes. And please: send along your own observations. No doubt we can come up with a book. (more…)

Holding it all up.

It’s been a nasty month health-wise (more on that dismal topic soon).
This guy seems to be taking his burdens in stride.
I’ll take the lesson.