The plan, which I never hide from my Dear Readers, is to salvage this post with a few lame videos of the cats of Marlinspike Hall. I've been trying to put together some footage of Dobby the Runt and his affinity for all things "butt," however, the little guy has an uncanny awareness of the camera and refuses to be cute or even very butt oriented in its presence.
Today, then, I must do two things, beyond hearing that my best bet is to be left shoulderless, with a flail arm -- I must arrange for this thing to be flushed, if, indeed, it still can be, and I must call the surgeon who put it in, and arrange for it to be removed. I got it at the insistance of the doctor who oversaw my subanesthetic ketamine infusions, my last ditch effort to quell the advances of CRPS. Every doctor and nurse that I have asked, except for MDVIP Go-To-Guy, has insisted that I should keep it -- saying vague things like "you never know," voices trailing off with much drama. Do they USE it? No! "It's too close to the infection site, to the incision site..." "I am not trained to use it..." "We could use it, but we'd have to get the IV Team..."
Go-To-Guy, I trust him. He thinks things through, has no interests in play other than my welfare and avoiding as many bumps in the road of this journey as possible.
I was hoping to have the blood work results from Monday before visiting ShoulderMan, as they might give a hint of a clue as to what is going on, but the results aren't in. Of particular interest, beyond white counts, are the C-Reactive Protein and the sedimentation rate. Both are indicators of inflammation/infection, but one is elevated in a more acute situation and the other indicates a more chronic course. Historically, when I've been under the gun from these bacterial miscreants, BOTH tests have been greatly elevated.
I know you are tired of hearing about it. Well, I am tired of living it. How I wish that this osteomyelitis and this insane CRPS were deadly instead of causing unlimited pain and disability!
I did a video update of what my feet and hands look like, since the last one was from May 2011, if you don't count the ones I did in January 2012 -- and I don't, because the circumstances then were... what? Extraordinary?!
My right foot/leg looks about the same, to me. The left foot is awful, is worse, though it doesn't seem to show the change, visually, not the way I feel it. Both legs are peeling and have larger areas of "ash." This despite being cleaned daily, and -- for the past three nights, at least -- coated in lotion. The skin seems to no longer absorb lotion or oils.
The left leg and foot are the banes of my existence, right now. Spasming, severely spasming, burning, aching.
My hands are much worse in terms of pain but -- apart from both sets of middle finger and thumb nails (ah, the perverse symmetry of this disorder!) -- look about the same. Both hands were peeling, much like my feet, so I suppose I have the benefit of "new" skin! I have significant tremor now, and not the greatest grip in the world, on either side. It used to be that the pain sort of followed the areas of discoloration, but now the burning and aching extend beyond those former borders. In the left arm -- all the way to the shoulder. I very much hope that is going to change.
Dobby is now asleep. I think I will sit here and stare at him for a while, and try to see the way that he sees.
Or I could get on the phone and start the process of getting this port flushed and yanked. Wish us luck chez ShoulderMan -- and wish him patience, and insight, as he must surely be as sick of all this as I am.
He senses that I'm drifting into Trouble Territory, however, and may just think that wasting my troubled time recording his predilection for tail pulls and rear whacks is a little too ridiculous, even for me. Dobby has never before been a lap cat but now gently climbs all over me -- still causing a few episodes of spontaneous screaming when he missteps -- and stares. I've noted before that he never got the "staring is aggression" memo.
Dobby will stare at you, pupils huge, all placid-faced and irresistibly pink-nosed -- absolutely luminous -- for as long as 15 or 20 minutes. He doesn't mind in the least should you stare back, though he does pick up on *your* aggression, should you harbor any. Should you be thinking, for example, "Why the hell is this cat staring at me? What, do I have mustard greens stuck to my teeth? Does he know about that vet appointment?"
The iconic photograph of Dobby, iconic for those of us who know his unique character and weirdnesses, is called "Dobbox." The love of boxes is not unique, of course, but he seemed to consider this small one a sort of home base, from whence he could survey the world, and particularly, Fred, with immunity from accusations of Stare Aggression. He'd trot over to it, hop in, do the "perfect cat" pose, and immerse himself in the pleasure of staring at Fred, who kept the box next to his office chair.
We used to enjoy yelling out "olly olly oxen free," and then watching Dobby careen around the corner, head high, ears flattened, tail whipping in his own wake, flying to his box.
One night, Fred was working (assiduously, always assiduously -- there's no time wasting going on, no, not ever) and felt The Runt's eyes boring through the back of his lovely curly head. Dobby sat in his box, adoring Fred, with hardly a blink of a break, for over 20 minutes. At the 20 minute mark, in fact, Fred snapped this picture. You know, the iconic one.
 |
| Dobbox |
I created one of those "Magic Movies" that Flip video offers for videographers afflicted with shaking hands and not much imagination, using what little The Dobster allowed to be recorded -- a couple of lame butt whacks, tail pulls, and the obligatory scene with a brush. Excuse me, *The* Brush. We've purchased five different brushes in an attempt to get him to give up chirping and grabbing for the worn out one seen here, to no avail. He sniffs them, then bats them on the floor, and begins the most god-awful wailing you've ever heard.
It's lame but hey, it's a cat video, and that buys me a few paragraphs for a Pity Party and enough space for a CRPS / RSD update of my feet and hands -- the going rate for the blogger who navel-gazes.
I see the orthopedic surgeon, Dr. ShoulderMan, this afternoon, for the second post-op visit. It's not going to be pleasant, I fear. Although the decision about whether my immune system can support another prosthesis has already been made, by my body, I still don't look forward to hearing it from him.
The fistula has reappeared right next to the newly closed wound from the February 13 surgery, which is just below the healed incision from the January 23 operation. It ain't pretty. I've been febrile for the last 8 days, with sweats and increased pain, and an almost constant headache. The Infectious Disease folks didn't bat a proverbial eye before changing the antibiotic, accepting without question my suggestion that the bleeping infection is back, or more likely, has never left, lurking as it does behind the teflon shield of its biofilm.
I have completely dropped the ball regarding the port that is implanted in my chest. I called the cancer clinic that usually takes care of flushing it every 6 weeks, to keep it patent, and they required a new physician order. Well, I made that call, but haven't followed up with the appointment, because in the course of conversing with MDVIP Go-To-Guy, he got a little too animated at the idea that the biofilm infectious phenomena might well be happening to/on that port. My mind shut down. According to legend, the first culpable biofilm identified came from someone's pacemaker:
[Two years after Costerton coined the word/concept biofilm] Tom Marrie, a young doctor working in Halifax, Nova Scotia, examined a feverish homeless man who had wandered off the street and into his emergency room. The man had a raging staph infection and, on his chest, a lump the size and shape of a cigarette pack. It was an infected pacemaker, Marrie reasoned. For three weeks the man was given huge doses of antibiotics but did not get better, so Marrie and his team decided to operate. They invited Costerton to sit in. “If there were ever going to be a biofilm infection in a human being, it was going to be on the end of that pacemaker,” Costerton says. “We took out the pacemaker and there was our first medical biofilm. It was a great big thick layer of bacteria and slime, just caked on.”
Biofilms on implants are now recognized as a serious and growing health problem. Bacterial infections hit 2 percent to 4 percent of all implants. Of the 2 million hip and knee replacements performed worldwide each year, 40,000 become infected. More than a third of these infections lead to amputation, and not with very successful results: Most of those people die. “Implant operations have a 98 percent success rate, so people don’t want to talk about the infections,” Costerton says. “They’re a bit of a disgrace, really.”
Biofilm infections are not limited to implants. They can be found in the bodies of the young and the healthy. Many children suffer from undiagnosed biofilm infections in their ears, which require months of oral antibiotic therapy while the underlying infection smolders untouched. Millions of others live with chronic biofilms: urinary tract infections in women that last for years; prostatitis that no antibiotics permanently cure; bone infections (osteomyelitis) that cripple and immobilize people for the rest of their lives. Each year roughly 500,000 people in the United States die of biofilm-associated infections, nearly as many as those who die of cancer.
As Marrie’s experience shows, biofilms repel antibiotics, although scientists do not fully understand how. Some drugs cannot fully penetrate the biofilm’s protective matrix. In other cases, even though most of the germs die, enough remain alive to regroup and develop another biofilm. The matrix also keeps its resident germs under cover, hiding the chemical receptors on the bacteria so that drugs cannot latch onto them and kill the germs.
The study of this newly discovered behavior is rooted in the basic and ancient biology of bacteria. Geneticist Bonnie Bassler of Princeton University thinks group-living bacteria may give us a window onto the origins of multicellular life. “Bacteria grow best when each one does its own thing…together,” she says. “Bacteriologists had it wrong for the past 300 years—bacteria don’t live alone.”
Today, then, I must do two things, beyond hearing that my best bet is to be left shoulderless, with a flail arm -- I must arrange for this thing to be flushed, if, indeed, it still can be, and I must call the surgeon who put it in, and arrange for it to be removed. I got it at the insistance of the doctor who oversaw my subanesthetic ketamine infusions, my last ditch effort to quell the advances of CRPS. Every doctor and nurse that I have asked, except for MDVIP Go-To-Guy, has insisted that I should keep it -- saying vague things like "you never know," voices trailing off with much drama. Do they USE it? No! "It's too close to the infection site, to the incision site..." "I am not trained to use it..." "We could use it, but we'd have to get the IV Team..."
Go-To-Guy, I trust him. He thinks things through, has no interests in play other than my welfare and avoiding as many bumps in the road of this journey as possible.
I was hoping to have the blood work results from Monday before visiting ShoulderMan, as they might give a hint of a clue as to what is going on, but the results aren't in. Of particular interest, beyond white counts, are the C-Reactive Protein and the sedimentation rate. Both are indicators of inflammation/infection, but one is elevated in a more acute situation and the other indicates a more chronic course. Historically, when I've been under the gun from these bacterial miscreants, BOTH tests have been greatly elevated.
I know you are tired of hearing about it. Well, I am tired of living it. How I wish that this osteomyelitis and this insane CRPS were deadly instead of causing unlimited pain and disability!
I did a video update of what my feet and hands look like, since the last one was from May 2011, if you don't count the ones I did in January 2012 -- and I don't, because the circumstances then were... what? Extraordinary?!
My right foot/leg looks about the same, to me. The left foot is awful, is worse, though it doesn't seem to show the change, visually, not the way I feel it. Both legs are peeling and have larger areas of "ash." This despite being cleaned daily, and -- for the past three nights, at least -- coated in lotion. The skin seems to no longer absorb lotion or oils.
The left leg and foot are the banes of my existence, right now. Spasming, severely spasming, burning, aching.
My hands are much worse in terms of pain but -- apart from both sets of middle finger and thumb nails (ah, the perverse symmetry of this disorder!) -- look about the same. Both hands were peeling, much like my feet, so I suppose I have the benefit of "new" skin! I have significant tremor now, and not the greatest grip in the world, on either side. It used to be that the pain sort of followed the areas of discoloration, but now the burning and aching extend beyond those former borders. In the left arm -- all the way to the shoulder. I very much hope that is going to change.
Dobby is now asleep. I think I will sit here and stare at him for a while, and try to see the way that he sees.
Or I could get on the phone and start the process of getting this port flushed and yanked. Wish us luck chez ShoulderMan -- and wish him patience, and insight, as he must surely be as sick of all this as I am.
