Stoned Saga, Continued…

First, I'd like to thank all of the kind souls who sent me notes of support and advice since my last post, which detailed the recent medical tumult I was going through. I apologize for not replying to any of them, as it turns out the events recounted in my last essay where only opening stanzas of a longer composition. I'm afraid most of the notes and comments sent will have to be left without response, but please know they are appreciated beyond words. And now, on with the continuation of my woeful saga.…

When last I left you, dear readers, I told the tale of my supposed kidney stone and the pain and misery it caused (if you missed my last post, click here to catch up). Well, turns out that was only the beginning of the story…

After my visit to the ER two Sundays ago, catalyzed by searing, unbearable pain in my right lower back and flank which was diagnosed as most likely caused by a recently passed kidney stone, I went home and took to the bed, expecting the pain to diminish and eventually dissipate completely. Instead, the agony steadily grew worse, so much so that I started taking oxycodone to try to take the edge off. I HATE taking opioids, because in my experience they really don't diminish the pain but just get your head so fogged up that you're not really cognizant of it or anything else, for that matter. Since my mind is one of the last things that is still fully functional, I'm quite reticent to screw with it. But the pain in my right side was intense and unrelenting, so I hopped myself up on goofballs and tried to ride out the storm.

By Tuesday afternoon, despite my being junked up on the legal equivalent of smack, the pain in my back and side had me writhing in my bed. I called the doctor and was told to get my sorry ass immediately back to the emergency room. Ugh.

Emergency rooms are surely included somewhere in Dante's Inferno, and normally I'd rather gouge my eyes out than have to deal with the ER and the minions of Satan who inhabit it. But the pain in my back far eclipsed any I would have engendered by said eye gouging, so off to the ER I went. Note: in actuality the people staffing emergency rooms are dedicated and hard-working, doing a job many others in the medical profession shun. And the ones I interacted with during both of my visits were actually quite nice and tried to make the experience as bearable as possible. But since they work in the bowels of hell, one can come to no conclusion other than that they must be demonoids. Very nice and dedicated demonoids, but underlings of the Prince of Darkness for sure.

Once back at the emergency room on Tuesday, all the tests previously done on Sunday were replicated – blood tests, urine analysis, and yet another CT scan. I wasn't thrilled about having another CT scan, since these expose you to a tremendous amount of radiation. In the case of abdominal CT scans, of which I had two in the space of two days, each exposes the patient to the equivalent radiation of 400 chest x-rays (click here). So, I will be able to read by the glow of my own belly for the foreseeable future. On a positive note, my wife and I should see some significant savings on our electric bills.

After all the tests were complete, no new significant findings were discovered except for the presence of a few white cells in my urine. This meant I might have a kidney infection, so cultures were ordered. Mercifully, while I was caught in the tendrils of Hades for hours and hours and hours the horrible pain I'd been experiencing for days started to subside, for no discernible reason. Not one to look a gift horse in the mouth, I asked no questions and was only grateful for the relief.

I was scheduled to see a urologist the following morning, and when I showed up for the appointment he took one look at the CT scan reports and immediately noted that among the findings were that I had a very distended bladder. An ultrasound revealed that my bladder was indeed quite enlarged, so the urologist informed me that I was likely retaining urine and told me he needed to catheterize me in order to drain my bladder. Yikers!

By this time I was so worn down by the events of the previous four days and my mind so bedraggled by the after effects of pain and opioids that I could barely utter a peep of protest. Before I was quite fully aware of what was happening, a tube was being snaked down my trouser worm, yet another lovely experience bestowed upon me by multiple sclerosis, the gift that keeps on taking.

After the catheter was inserted, out of my bladder poured forth at least three times the amount of urine that a human bladder should hold. Seems I had been retaining urine for quite some time, and this might have explained, according to the urologist, the pain emanating from my kidney. One problem with this theory is that, as I noted above, the pain had begun to noticeably dissipate the night before while I was in the ER, before the urine was drained from my bladder. Of course, the urologist stuck to his guns with his theory, as so many doctors are wont to do.

The cavalcade of whimsy that started when the pain first struck on Saturday only continued to gain momentum when the urologist strongly recommended my having a catheter inserted again, this time to stay in place for about a week, in order to "give my bladder a rest ". Of course, this would mean I'd urinate into a bag attached to the catheter for that week, the prospect of which I was none too keen on. I doth protested vociferously, and negotiated him down to 36 hours, a figure neither of us was very happy about. He mentioned the prospect of my perhaps needing a catheter permanently, which started a conversation about quality versus quantity when it comes to life, which I won't go into here but should be fodder of a different kind of blog post.

Suffice it to say, I went home with a tube sticking out of my ukulele, a urine collection bag strapped to my leg. My angelic wife, who has been by my side through this entire twisted ordeal, took along with her a bigger collection bag to be used when I got home, in place of the much smaller leg bag. Yippee!

After he consulted with the urologist, my neurologist called me none too pleased about my unwillingness to be catheterized for the recommended full week, and a patient-doctor tiff ensued. After 14 years, my neuro and I have developed a genuine mutual affection, but this time around neither of us were all that happy with each other. I pointed out that I had been urinating noticeably less ever since my infusion of Rituxan about six weeks ago, which I blamed for my distended bladder. My neuro insisted the Rituxan could have no such effect. Having had extensive experience administering Rituxan, he'd have none of this. Regardless, he strongly urged that I do the catheter thing for more than 36 hours, a suggestion to which I rejected vehemently. Call me Mr. Cranky Pants. 

After we got off the phone and I calmed down a bit, I reflected upon his advice and decided that he was likely correct. No sense playing with fire, and I certainly didn't want a reprise of the horrendous pain I'd experienced, so I spoke to the urologist and agreed that I would keep the catheter in through the weekend.

And what a weekend! Having a tube shoved up your schmeckel for days on end is more fun than a night at the GiggleSnort Motel – not! My dear wife became quite adept at draining urine collection bags and switching between the leg bag and big mama bag, after a few false starts resulting in the dispersal of urine in places it shouldn't be dispersed. Since my right arm and hand are completely paralyzed and useless, and my left, while still functional, is getting increasingly less so, I was unfortunately of limited help with these various processes. I felt about as useful as a condom dispenser in a lesbian bar.

Finally, Monday rolled around and it was off to the urologist to get the catheter removed. Getting the tube yanked out of my tallywhacker, the prospect of which caused considerable anxiety, turned out not to be so terrible – hardly noticeable, in fact. I'll see the urologist again in 10 days, and hopefully between now and then things in the plumbing department will get back to what passes for normal in a multiple sclerosis patient. Over the last few days I've finally begun feeling better, so hopefully I'm in recovery mode.

The urologist informed me that the urine cultures turned out negative, so I didn't have a kidney infection. The CT scans never showed evidence of a kidney stone, and I remain unconvinced that my bloated bladder would result in such an acute pain focused on one specific area of my body. So the cause of my agony remains a mystery. As does the exact nature of my neurologic disease (my MS diagnosis has never been able to be confirmed), as well as the roots of my widespread endocrine dysfunctions, which continues to defy reasonable explanation.

Given the mass of mysteries surrounding my various debilitating medical conditions, I can only come to one logical conclusion: somebody somewhere has a voodoo doll of me and is using it as a pincushion, or maybe as a dog's chew toy. Of one thing I am certain – somebody put the Whammy on me.

In that spirit, the song that has been running through my head nonstop this week, as I lay in bed with a tube sticking out of my stubby cudgel contemplating my slowly spiraling the drain over the last 15 years, has been this one. Written and performed by the one-of-a-kind Screamin’ Jay Hawkins, a man who is reliably reported to have fathered over 60 children, it expresses precisely the sentiment I've been feeling: someone put a spell on me, and not in a good way…

I'm Back (though still a bit illin’)

Image by theG™ via Flickr

Hey folks, I'm finally feeling well enough to make a post, although I think it'll be a quick one, since my stamina still leaves much to be desired. Three weeks after being hit with this somewhat mysterious illness, I'm still running a low-grade fever, and my energy levels are quite low.

First and foremost, I'd like to deeply thank all of the wonderful people who have sent healing messages and well wishes via e-mail or comments on this blog. Although I'm not usually at a loss for words, I truly cannot express how deeply your expressions of concern are appreciated. When I started this blog a little over a year and a half ago, I never in my wildest dreams imagined it would attain the popularity that it has, and I'd like to thank each and every reader for your input and support through good times and bad. Although I have not been able to spend any time on the computer, I have been able to read e-mails on my phone, so your messages have gotten through, each one a drop of sunshine in an otherwise miserable experience. Unfortunately, I've not been able to respond to these e-mails because I rely on voice recognition software to "write" my responses, but as soon as I'm feeling up to it I plan on answering each e-mail individually. Please be patient, though, as my reduced energy levels and the sheer volume of e-mails that need responses will make this a slow process.

In a nutshell, three weeks ago today I was hit with a fever of unknown origin. Though both my blood and spinal fluid have been cultured for infections, none has shown up. Despite this, my illness has seemed to respond favorably to antibiotics, which further deepens the questions surrounding it.

I spent five days in the hospital, and yes, much like my last visit to the hospital in July, I did again have a very colorful roommate, who I'll write about in a future post. While in the hospital, my fever spiked to 102°, which is quite high given that my normal body temperature is about 97.2°. Needless to say this was scary, but large doses of ibuprofen managed to get the fever under control. As all of you with MS are aware, fever sends MS symptoms into overdrive, making such episodes all the more frightening. Worse yet, the nursing care at the hospital was in a word deplorable, as the ward I was in was understaffed, and the staff that was in place was simply overwhelmed by the volume of patients they needed to attend to. Still, the constant struggle trying to get nursing attention for both my roommate and I did nothing to alleviate my intense discomfort, and was frankly enraging.

All the more frustrating is the fact that the hospital I was in, Roosevelt Hospital in Manhattan, has a "VIP" floor (click here for details) on which patients have beautifully appointed rooms, individualized nursing care, gourmet meals, extra accommodations for family to stay with them, and even afternoon tea service. Naturally, all this comes at a steep price, starting at $400 per night for a "standard" room, above and beyond the regular exorbitant hospital fees. Of course, no insurance plan will cover such expenses, so these elite services are the province of the very rich, of whom there are plenty in NYC, who can afford to pay such prices out-of-pocket. Since my pain management doctor has his offices on the opposite end of that same floor, I've seen some of these facilities firsthand, including the beautiful dark hardwood floors (as opposed to the institutional tiles in the rest of the hospital) and the uniformed concierge ever vigilant at his desk. Yes, here in New York City, often called the capital of the world, the very rich get extraordinary care in the same hospital in which regular folks can't get a god-damned nurse or nurse's aide to give them their medication on time or to help out a roommate who is violently throwing up. So much for the myth of a just society…

Okay, that's it for now. Before I blow a gasket, it's back to bed for me. I promise to fill in the details in the coming days, not all of which are quite so dreary. Even in the most troublesome days there are reasons to laugh, and concentrating on just taking it one day at a time, along with the constant acknowledgment that we are all just bit players in a huge theater of the absurd, goes a long way in making things bearable. As Nietzsche said, that which does not kill us makes us stronger, but as a friend of mine responded, that which does not kill us can make us pretty damn sick.

My deep thanks again to all of you who have reached out in support, and a special shout out to my wife Karen, my mom, and the rest of my family, who have gone above and beyond the call of duty in caring for an ailing kamikaze…