Tuesday, June 19, 2018

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…


  1. Oh Marc, thank you for the update. You could probably correctly add hundreds or thousands of people who did not send missives, to the many who did. All sending you good vibes in hope of answers for the cause and a remedy for the alarming level of new pain. Cause not quite so definite or clear but yes, the cath sounded necessary, regardless. Recuperate well from the exhausting side trip.

  2. I was wondering if you happen to know any synonyms for penis?

    1. Marc's creative genius at work. Who else could turn a sordid affair into a good read? Sorry Marc you had to suffer to bring this to us. You are a true inspiration.

  3. Glad you are doing better. The indignities of MS can be dehumanizing-the worst part of the disease, as you have so eloquently written about. A distended bladder can be very painful, but what you described sounds more like the agony you can experience when the urine backs up from an overfull bladder into the ureters into the kidneys. I wonder why no one in the Emergency Department recognized how full your bladder was?

  4. First, I'm glad you're feeling better. Second, did you know you are a gifted comedic writer? I felt guilty laughing as I did every time you came up with another priceless word choice. Keep feeling better.

  5. Wow.... I am so sorry you had to go through this. I was really interested in your ordeal because I actually logged several hours in the emergency department a few days ago, with a very similar event. Writhing in the worst pain I have ever, ever had, I was certain I was having an attack of appendicitis. Kidney stones were mentioned too. They did a CT scan, ultrasound and lots of blood work. Nothing showed up but high blood lactic acid and a slightly acidic urinalysis.

    I had wondered the day before if I had a UTI because of what felt like bladder pressure. Maybe my MS journey is taking a new direction.

    I hope you feel better soon. Your humor is great medicine.

  6. In 17 years of MS my only ever ER visit was 6 months ago due to what was eventually diagnosed as a distended bladder. I was in such pain I had the first panic attack of my life. It took them 2 days to figure out it wasn't a UTI or kidney infection. ER is certainly one of the outer circles of hell.
    I'm so glad we both escaped.

  7. Your writing style is so enjoyable. Thanks for sharing yet another story on this terrible sucky journey. Glad to hear the demons didn't keep you.

  8. Thank you for the update. I cry and I laugh, your sharing is a balm of understanding and incite.
    Hope you're feeling better. Having an angel on your side helps counter the Hell and the spell. I know, I have one too....

  9. An annual abdominal & renal ultrasound is part of the standard VA care for SCI patients, and MS patients are included under that umbrella. When I was still mobile, and under civilian care, a Urology consult was not suggested. Less than two years after my diagnosis, I wound up in the ER for an unrelated issue and when I could not produce a urine sample, I was cathed. Imagine everyone's surprise -- and my great relief -- when TWO LITERS of urine burst out! I had been gradually retaining urine and had stretched my bladder horribly. I now have a suprapubic catheter. Moral of the story: patients with MS should have their urinary system checked annually!

  10. Marc, maybe don't entirely discount the neuralgia theory just yet. My two worst attacks have been a result of urinary tract infections.