My good friend Mitch Sturgeon, founder of the MS themed blog Enjoying the Ride, has written a compelling memoir, also called Enjoying the Ride. Mitch's book recounts his life both before and after MS forever altered its course, and the story he weaves makes for a fascinating read. In his straightforward and episodic style, Mitch tells tales both entertaining and poignant, including those of his special relationship with his mom, a quadriplegic from the time Mitch was a small boy. On so many levels, echoes from the past ricochet into Mitch's experience with his own progressing disabilities, revealing subtle truths and even some family secrets along the way. I recommend this book wholeheartedly, so much so that I was honored to write its forward… Enjoying The Ride is available from Amazon in both electronic and paperback versions (click here)…
Sunday, August 19, 2018
Sorry, but this is yet another post – hopefully the last – about my ongoing struggles with kidney pain, catheters, and UTIs (Urinary Tract Infections). I've written three previous essays in this rather regrettable series, the first detailing my waking with horrendous pain in my right lower back, which led me to visit the emergency room twice in three days (click here), the second delving into the myriad pleasures of having a catheter inserted into my wing wong (click here), and the third detailing my contracting a UTI (Unwanted Trickle Interference) as a result of that catheterization, including my belief that it may have been brought on by my neglecting to sufficiently protect myself against the evil eye (click here).
Unfortunately, although I thought that last essay would be the end of this sad saga – given my new strategy of preempting any potential evil eye by pointing out that "Life Is a Terminal Illness" every time I say something even vaguely optimistic – I was nevertheless once again beset by The Whammy. On this occasion my wretched curse took the form of yet another UTI (Unpleasant Tinkle Insurrection). Yes, after fighting off the first infection with the help of two different antibiotics, I was shanghaied by another – or perhaps a continuation of the first – just about a week after I believed I was free and clear of the woes that had plagued me for the better part of two months.
Alas, I was stupendously wrong. Just as I felt I was beginning to regain strength to levels approaching those of my old normal – which is, albeit, a level far below optimal after 15 years with progressive MS – I awoke one day feeling feverish, and upon relieving myself felt that now all-too-familiar burning sensation in my Jolly Roger, an incendiary discomfort in my nether regions that led to an immediate phone call to my urologist. After I informed him of my profuse distress, he phoned in a prescription for yet more antibiotics and told me that if these did not have the desired effect I could very well be hospital bound for some high-powered intravenous antibiotics targeted directly at whatever pernicious bug had bedeviled me. The prospect of such a visit rose forth in me the vehement desire to unceremoniously regurgitate my previous night’s supper in some spectacular fashion.
Thus began another week spent in semi-delirium, as the infection and its antibiotic foe took up arms against each other, my body an increasingly beleaguered battlefield torn asunder by the ravages of microbial warfare. To my good fortune this conflict coincided with another taking place on a ballfield in Boston, as my beloved Red Sox took on their arch nemesis New York Yankees in a crucial four-game joust, providing my disease addled brain with some welcomed diversion. The Boston nine took all four contests against the evil incarnate Yankees, which I took to be a favorable portent for the insurrection being decided deep within my innards. These UTIs (Ungainly Tallywhacker Intruders) have shown themselves to be quite the troublesome beasties, far more debilitating than I ever could have imagined.
Finally, three or four days shy of fortnight the fevers and associated symptoms relented but left in their wake a malingering malaise, a weariness and heaviness of body and spirit that has left me spent beyond reason. I can only surmise that this is the product of a physical calculus whose equation includes multiple infections; several rounds of powerful antibiotics; the bodily wear and tear of having a garden hose inserted and then five days later wrenched from my who who dilly; and days on end of fevers, sweats, and tortured sleep.
Although the acute symptoms of this last infection subsided well over a week ago, it is only now that I have found the fortitude to put these words to paper, or, more correctly, to dictate them into my iPad whilst reclining in bed. When I venture out of bed to sit in my wheelchair I feel as if I might pass out after only an hour or so, sometimes less, like a Victorian lady prone to the vapors. Should this delicate condition persist much longer, I suppose a consult with yet another modern disciple of Hippocrates will be necessitated. I beseech the heavens above to intervene and make null and void this last option.
Egads, it appears that during my labors composing this essay I have become possessed by a ghostly essence aspiring to the literary stylings of Dickens or perhaps Melville, which I must now endeavor to shake loose from my earthly vessel. I best try reading something good and trashy, like some of my previous blog posts.
Anyway, yeah, in plain English the last few months have totally sucked. Bigly, I can tell you, sucked bigly. And, as you might by now have guessed, I am pretty much bored out of my gourd. Fingers crossed, these pages will soon be back to Wheelchair Kamikaze's usual mix of cynical looks at MS related research, self-indulgently introspective essays, and other such multiple sclerosis and Marc Stecker themed fiddle faddle. Enough already with the UTIs (Ultimately Tiresome Information), penis synonyms, and bellyaching. I'm sick of being sick, and just want to go back to being sick, if that makes any sense at all. Harrumph.
Life is a terminal illness.
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Oh dear....I don't normally giggle and snicker my way through reading the horrible misfortune of others but you certainly have a way with words. Surely relief is near for you. Enough is enough. xReplyDelete
Thanks for your comment. Yes, enough IS enough. And as for giggling and snickering, please, be my guest. I know that if I didn't find some humor in this situation I would surely go mad…Delete
I feel like I've already posted this comment (on another blog post) but just in case...I am 6 months UTI-free. A bidet, apple cider vinegar, d'mannose, cranberry pills, probiotics - daily.ReplyDelete
Are they helping to forestall another UTI or is it Dumbo's feather (placebo). No idea. That gift horse can close his mouth, I ain't looking.
Hi Sue, glad to hear that you are six months UTI free. Hopefully, six months from now, I'll be able to say the same thing. I'm doing apple cider vinegar, cranberry juice, and probiotics. I think my neurologist wants me to get on high-dose vitamin C and something else in combination, not sure what that something else is. Supposed to talk to him on Friday. And, hey, if it is placebo, well, placebo is a real physiological phenomenon, so I would take it, too…Delete
Marc, Do you think this series of UTI's is associated with the use of Rituxan?ReplyDelete
Hey Mary Beth, I've been wondering that same thing myself. Seems to me that having a large portion of your immune system deactivated would lend itself to getting infections, or at least hinder fighting off infections. I do know that I never had a UTI before, so there's that…Delete
UTIs are not uncommon among those of us with MS; however, the fact that you have never had one before the use of Rituxan makes me think it is the culprit. I have commented about Rituxan on your blog several years ago. As a former oncology nurse, Rituxan was my favorite drug as a biotherapy agent for those with certain oncology diagnoses. It was wonderfully effective and is now being used for more than oncology treatment. But, it is a big gun and you never know how it may affect an individual's immune system. I am truly sorry to hear that you have had such a struggle with repeated urinary tract problems - they are awful. Like Tysabri, which is effective with so many people that the few who are negatively affected do not keep it off the market, Rituxan may have a few users that cannot tolerate the side effects.Delete
I feel for you, UTI's can cause a lot of pain with MS as well as all sorts of other symptoms that you mention like fever, chills, delerium, weakness etc. Another thing people with MS are very susceptible to is Candida overgrowth, add antibiotics, steroids and other immune modulating drugs and it soon becomes out of control. Candida itself can cause UTI's so I really hope that you are at least taking some good strong probiotics. I have been struggling for over 3 years trying to get rid of Candida overgrowth, ever since having a UTI and being on three different antibiotics. I realized then that I had Candida overgrowth prior to getting the UTI and that it probably contributed. Anyway please look into it and I hope you are feeling better.ReplyDelete
Hi, thanks for the info. I'll have to look into the candida angle. That's something else to bring up with the neuro. I do know that I'm no longer running a fever, but I am still feeling quite unwell. Figured it was just my body taking its sweet time recovering from what it's been through, but it sure feels like there's still something going on. I do take a strong probiotic, so hopefully that has helped… Thanks again.Delete
Marc, You are a gift to the MS community. Your posts make me want to laugh out loud and they’re always so immaculately worded and so funny! I really hope you get over the dread UTIs (whatever that stands for).ReplyDelete
Hi Melinda, I'm happy that I could make you laugh. This essay in particular included some linguistic flourishes, and I did write it in a style that isn't quite my own. It actually did feel like I was a little bit possessed, thinking I might have picked up the tempo of the language because I just watched "Alias Grace" on Netflix. I've always admired the short, direct style of Hemingway, but I seem to be completely incapable of keeping things pithy.Delete
If I remember from your earlier post, you said you had avoided a UTI until this recent series. Sounds like this has more than negated your previous string of urine -related "luck". My father (also with secondary progressive MS) ignored symptoms of a UTI back in April and ended up septic in the hospital with a fever of 105°. He took such a hit that he now requires 24 seven care and left the hospital with a nasty bedsore. When he was first admitted to the hospital the UTI could have been dubbed the Ultimately Terminal Illness, but luckily the IV antibiotics did the trick. Have you heard of cystex? Dr. Calabresi recommended he take it twice daily for preventative reasons, and thus far it's been very helpful! Keep the faith, there must be light at the end of this tunnel…ReplyDelete
Good grief, that's horrible news about your dad. I'm not sure that I knew your father had MS as well.Delete
In doing my research I am now aware that a UTI left unchecked can be a very dangerous thing. Infections in general are like kryptonite for PwMS, but these UTIs seem to be especially corrosive.
I'll have to check on the cystex. Thanks for mentioning it.
Hope all is as well as can be with you…
You're right...UTI's suck bigly. I have to take a low dose antibiotic every day, it has helped keep the Urologist away. *sigh*ReplyDelete
I find it almost incredible how many people have come forward with their own UTI horror stories since I started writing this series of posts. Like we don't have enough to deal with!Delete
I hope the low-dose antibiotics keep working, and that you are able to avoid any further infections. I'm assuming that you are on probiotics as well, to counteract whatever bed affects the antibiotics may have on your gut…
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