Reblog: The reluctant patient

I started writing a blog post months ago about my current decline, new symptoms, new diagnoses, horrible and risky testing that I’m trying hard to avoid, and even more horrible and risky procedures and treatments. I never seem to be able to conclude an entire post, but, luckily, my friend Caroline is in exactly the same position. It’s almost unbelievable how closely aligned our current situations are, including the same doctors (we first met for a quick coffee while we were both in California from out of state to go to the same clinic), the same offers for testing and surgery and the same reluctant mind sets (the latter feels most important because I have one person who gets me).

Caroline has written such a clear and astute account of the mental gymnastics we go through when coming to terms with structural diagnoses and the agonizing decisions that need to be made when weighing the devil you know against the one you don’t.

So, thank you Caroline for writing this update for both of us! And for my friends and family: If you’d like to know what’s happening with me, just read this and everywhere she has written “urinate,” replace it with “poop” and you’ll get the gist of my life.

The reluctant patient

I am exhausted from being a patient. In the early days of my illness, I kept a journal, tracked symptoms, and made schedules. Now, I cannot be bothered on most days, but recently I have had to re-engage with my medical care due to declining health.

For years, I actively pursued tests that might shed light on why I feel so poorly. One of the most annoying aspects of having ME/CFS is that we look so normal on paper until you start digging into advanced testing. It is a strange place to be, to want positive test results that point to new treatment directions while at the same time hoping that nothing is seriously wrong. If a test comes back positive, I remind myself that knowledge is power. If it comes back negative, I can rule out a condition. Each investigation brings me closer to the truth behind my illness, regardless if it is negative or positive.

Over the years, my strategy has changed. Rather than pursuing medical explanations for each new symptom, I put my head in the sand, hoping it will all go away. Yet new symptoms are usually a harbinger of decline, especially when they settle in permanently. Ignoring symptoms when it gets to this point is rarely a winning prospect.

Continue reading here….

Autonomic Testing Payback

I didn’t get away with it and what’s happening is scaring me. I have been incredibly sick for the past 8 hours. I got home from the autonomic testing yesterday afternoon and I felt at my normal baseline all night. Went to sleep at my normal time and, two hours later, I woke up with violent chills. I couldn’t adjust my position without shaking all over. This is a reaction I have that I’ve never been able to work out — mast cell? autonomic? It feels very viral. It’s so systemic, I can’t sleep. For 4 hours, I was clothed, with my electric blanket on high, unable to stick my head or even a finger outside of the duvet, holding as still as possible to not cause the shakes. Then I started to burn up, my body like a furnace, had to lie naked outside of the covers, waiting for the bed to burst into flames. My temperature through the whole night stayed at 97.5. It seems inconceivable given what I was feeling internally.

But here’s what’s scaring me: My heart rate lying completely flat, before I even got out of bed, was in the high 80s. I am typically in the high 50s to mid-60s while at rest. I don’t think my supine heart rate has ever been that high, even at my sickest. I looked at the graph from my smart watch and — well, here: 

I KNOW many of my friends have heart rates much higher than this (and I can only imagine how awful it is), it’s just scary when it was totally normal until I’d been asleep for a few hours and then — bam. Skyrockets. Also, that it’s staying there today when I’m lying here, holding still.

What happened during the testing yesterday? Is this just payback? How can I feel so okay during the appointment and afterwards and then have all hell break loose in the middle of the night? I know this is what has always happened with me — the nighttime reactions — but it would be from Christmas excitement or socialising and I’d be feeling the toll throughout the day. I just wonder — what happened to my heart in the aftermath of the tests yesterday?

Mostly, I’ve just had the wind knocked out of my sails. I was on such a high, feeling like I was strong enough to come through the testing, off my meds, with no issues. Loving my body’s resiliency…

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Serendipitously, I had an appointment this morning with a cardiac electrophysiologist to ask his opinion about my vasovagal collapses. I had another one a few weeks ago and it was one of the worst yet (these are different from the nighttime chills/shakes — much more serious and have been happening since 2005, long before I was sick). This last episode was from a pelvic floor spasm and happened very quickly. My husband called the paramedics because I looked like I was dying and couldn’t talk, bradycardia making it hard to breath, hypotension. I was shaking all over, drenched in cold sweat, pooped the bed. It scared both of us.

I was able to chat with the EP this morning over video from my bed, thank you, covid. The bad news is, though, that he can’t help me. He said there’s no point in doing a heart monitor because my episodes are so sporadic and there’s no point in implanting a loop recorded (as a consideration for a pacemaker) if my heart rate isn’t going into the 30s or 20s. I can’t even imagine that. The dragging feeling of my heart in the 40s during one of these collapses is utterly horrific. He suggested a tilt table test and I said, “why, I just happened to have one yesterday.” He wasn’t really convinced that I have hyperadrenergic POTS. He wasn’t really interested in what happened to me in the night. Ultimately, he said I have no good choices — to avoid the collapses, I would have to avoid triggers, which means not having periods, not having bowel movements and not having sex. I’m wondering how to be okay with the stripping down of layers of life. The mourning of each loss is so immense. For all of us.

Autonomic Testing Revelation

Today I spent 3 hours getting autonomic testing at my new neurologist’s clinic and my mind is spinning from the info that came out of it.

I had this testing done at a hospital in 2013 when I was much, much sicker. The results were “inconclusive.” I wasn’t diagnosed with POTS because my heart rate didn’t go high enough and I was unable to complete the valsalva maneuver because I was simply too weak. I could barely make it through a conversation back then, so exhaling forcefully for that long wasn’t in the realm of possibility. I was subsequently diagnosed with orthostatic intolerance, a different form of dysautonomia, and I’ve been trying to manage it ever since with blood pressure medications, salt loading, compression stockings, IV fluids and all the little lifestyle changes I was advised to make (leg muscle tensing, elevated head of the bed, drink 16oz of plain water upon waking, electrolytes, not standing up too quickly etc.).

For the testing today, I hadn’t taken my BP meds, hydrocortisone, H1 and H2 blockers or any other medications or supplements in 60 hours (except my hormones because, damn you, period, don’t you dare think about peaking your ugly, angry red head in the door). I haven’t done  IVIG or IV fluids for 3 weeks. I felt like crap this morning, I was fasting, I couldn’t have my pint and a half of strong, black tea to kick my life-force into gear and I only slept 4 hours. I was a bit nervous of the testing, but… I felt better leaving the clinic than I did arriving! Even after a blood draw.

The good news is, I could do the valsalva test  — it’s really hard, but I had the muscle strength to do it — and I was fine during the tilt table test. My feet still felt like they were going to explode from the blood pooling and my neck got stiff and sore, but otherwise there were no issues. I remember how weak I was during this test in 2013, how I had to have them put the table down because I felt my vision blacking out and I had crippling vertigo for a full two weeks afterwards. I even wound up seeing a neurologist about it because I didn’t want to walk into walls for the rest of my life. Back at home today, I have a pretty bad headache and my neck feels stiff, but otherwise, I’m okay. It just feels so good to have some comparative evidence of my progression and resiliency. 

The results from today’s tests were 1) normal respiratory sinus arrhythmia, 2) normal QSART (quantitative sudomotor axon reflex test) result, 3) blunted valsalva ratio on 2 out of 5 tests (I’m not really sure what that means) and 4) the kicker: I have a new diagnosis: Hyperadrenergic POTS. I can’t believe it.

My BP is never, ever, ever in triple digits. I’m on Midodrine three times a day and about to start Fludrocortisone. Hypotension has been the running theme throughout my entire life, even before I was sick. Gotta get my blood pressure up, gotta drink water, gotta eat salt. My at-home lean tests (“poor man’s tilt table test”) have never shown a systolic BP higher than mid-90s, but, today, my resting supine BP was approximately 105/70 (what??) and, while upright, it got as high as 139/something (say WHAT?!).

A few years ago

I don’t know what to think. Suddenly I’m being told not to start the Fludrocortisone prescription I just filled and to reduce my Midodrine.

I have to research hyperadrenergic POTS, I only know a bit about it and I have no idea if it will change the direction of my care besides tweaking meds, but I’m THRILLED to show a higher BP, even if hyperadrenergic POTS is bad news. It makes me wonder if I should come off all of my medications and supplements! 

Halloween Update Litany

I’m going to try to write something. An update of sorts. Not necessarily because today is exactly nine years since this illness stepped into my body and started controlling the trajectory of my life, but more because it is a quiet Saturday and I can’t call any clinics and I don’t have any medical appointments. It’s Halloween, but we’re completely ignoring it this year. It’s a beautiful day, but I woke up after five hours sleep with bad brain symptoms, so I’m not up for going outside or calling a family member or washing my bed clothes, which are in dire need. And I’m just so tapped out on research right now. Endless, endless research into treatments and specialists and ways to bankrupt ourselves on nifty devices that might miraculously give a reprieve from symptoms or plateau my decline in functioning.

I often don’t write — even if I have the time and energy — because I feel like I want to express something meaningful and express it beautifully, or at least express it well. Express it in a way that others might identify with it or even be moved by it. Or, if not meaningful or moving, I’d like to be able to write something informative. But that takes more mental energy and creativity. I always find a reason not to tap into the emotions that are necessary to write deeply and thoughtfully. I stay sane with distraction, coasting along a wave of TV shows and dog cuddles, trying not to look into the depths below. I’m finding distraction harder this year.

After five years of a slow, but fairly steady increase in functioning, I’ve gone downhill. Not because my dog died or because wildfire smoke was choking us for weeks or because I can’t see my family and my one friend who kept me sane by visiting regularly. And not because of the emotional toll of the pandemic and the rage and heartbreak caused by the political strife in the world. That’s all just icing on the distress cake. The actual bulk of my cake is made of pain, exhaustion, reactions, and failing organs and bones, with thin, bitter layers of isolation and future worries between the tiers of sponge. It’s a really unpalatable cake.

When I first met my friend Jak over at Mast Cells & Collagen Behaving Badly, she had been through ME, then she was dealing with mast cell disease and her body had started to have problems from EDS (Ehlers-Danlos Syndrome, a connective tissue disorder). Most people I’ve met with this illness trifecta started having mast cell reactions after ME hit them. I was the other way around. I’d been dealing with angioedema since I was teenager and I first went into anaphylaxis in 2001. ME hit a decade later. When I met Jak, I didn’t have an EDS diagnosis and, when I first got it, I ignored it and decided it wasn’t true. I remembered, though, that Jak had said, “I could have told you that. With some of your symptoms, it seems obvious.” Her pain and subluxations didn’t start in earnest until she was in her 40s and dealing with peri-menapause, so she cautioned me that EDS could raise its head in the future. No, no, I’m not hypermobile, I said and I ignored it. Well, there’s no ignoring it now.

Last year, I went back to the top EDS doctor here in Seattle and told him I hadn’t believed his diagnosis and could we start from scratch, work me up again, see if he truly thought I had EDS? He smiled (good doctor), he agreed (did another physical exam), he reiterated that I had EDS and showed me what my body is not meant to do. He also diagnosed thoracic outlet syndrome (TOS). For all my research, there are so many odd things about my body that I barely notice. It’s like whack-a-mole — I’m just trying to push down whatever the most concerning thing is on any given day. What do I care if I can’t hang my clothes up or hold my phone to my face without losing circulation through my arms and having my hands go numb? It’s really not important in the grand scheme of this illness. You adapt. So when the doctor asked me if I felt anything as he manipulated my arm, I said, “Nothing. Except there’s no blood flowing and I have pins and needles.” He smiled gently again. “That’s not nothing. That’s what I’m looking for.” It took a very long time for blood to come back into my forearm and hand after whatever he did and I had electric zaps for hours. That was a year ago and I still haven’t read about TOS or whether those symptoms are normal or what to do about them. I don’t really care right now because I’m too busy trying to whack bigger, louder moles.

My leg pain has gotten much worse. I can’t stand in the kitchen to cook as long as I could before and, anytime I do, I have to wear compression stockings and a back brace, but still need to go to the couch and lie down with my feet up after a short while, groaning with the effort. My neck and back have gotten worse. Something in my thoracic spine keeps going out and my lower back and tailbone have a constant steady ache. My neck always feels unstable, so I move it very gingerly, but it also always feels like rebar, so I try not to immobilize it. I pull a different shoulder or neck muscle seemingly every day, usually from thrashing around in bed (unfortunately, not in a fun way, not when I’m conscious). I’m currently ignoring a jaw ache and maybe a cracked tooth from clamping in my sleep and the fact that my eyes never stop burning and are sore when I move them. My left patella keeps shifting out of place and it’s agony when it happens, so I’ve been doing a deep-dive into knee braces and kinesiology taping. I broke my wrist and finger this summer when Penny lunged at an off-leash dog and snapped my hand behind my mobility scooter seat. I’m still wearing a cast or a brace a full three months later and my right hand, which picked up the slack when I couldn’t use my left, has developed instability in the wrist and a subluxing thumb. When my endocrinologist heard about my fractures, she said we needed an appointment asap because she is very concerned that my osteoporosis has progressed. She’ll probably suggest I take more drugs. 🙄

And really none of this is that important because it all pales in comparison to my bowel hell. Bowhell.

Warning: lots of talk about poop and toilets ahead. Enemas barely work anymore. To have a bowel movement, I have to use a liter of water and massage my abdomen for sometimes hours each day. And “massage” sounds delicate. It’s not. I often worry I’m going to rupture something with my squeezing. With my broken wrist and finger, I couldn’t manage to press my abdomen properly for weeks and my bowels suffered. I couldn’t evacuate effectively, which meant I couldn’t eat enough and I didn’t sleep properly. Everything has a cascade effect.

Compounding my bathroom issues is how difficult it is to sit on a toilet. I lose circulation in my legs very quickly (even with a Squatty Potty) and it is incredibly painful on my neck and back. My doctor asked me when my neck was the most painful and I realised it is sitting on the toilet because I have no support for my spine and nothing to lean back on. I’ve resorted to using a hard neck brace (only sometimes — sometimes it makes it worse) and putting a chair in front of me to lean my forehead against, but, even so, after I’m done, I have to lie flat on the floor and, if I have the energy, use heat, traction and ice to help the spinal pain. I was never conscious of just how much I need to support my neck until two years ago when my mother was visiting and I’d made enough improvements energy-wise to go to the opera. Wow, three hours sitting in a short-backed chair was excruciating. I was almost in tears. I was dizzy, my heart rate was high, my legs were losing circulation (I’m short, so I was using my backpack as a foot stool) and I could not hold my head up.

So, sitting is an ordeal. And shitting is an ordeal.

I have a long history of vasovagal collapse from abdominal pain. In my twenties, it happened with the onset of my period because of severe dysmenorrhea. Shockingly, when I got sick, my cramps virtually disappeared. But they’re baaacck! And my period often likes to come three times in one month, so this cramping and inflammation, coupled with random pelvic floor spasms, coupled with colon pain has been a lot. Last June, I sat up in bed one morning and some deep part of my lower abdomen spasmed and I immediately went into a vasovagal episode. My heart rate went so low, that I was having trouble breathing. My blood pressure dropped, too, but the main problem was the bradycardia. I was shaking all over and trying not to black out, but after about 20 minutes, I had to call the paramedics. Before they even got here, the pain abruptly ended and, instantly, my heart rate came up and I could breathe again. (I told them not to come inside because of covid and I gave myself IV fluids at home. I’ve dealt with this before, emergency rooms really can’t help.)

From that day forward, every day for six weeks, I was in an acute bowel pain crisis. I couldn’t seem to eat anything that didn’t contribute to the pain across my transverse colon, I lost weight, I wept each evening, I slept poorly, my attention was never not on this organ that was constantly yelling at me that something was wrong. I wound up getting a CT scan (a big deal during covid and when I’ve had so much radiation in my life) and blood tests because I thought: what if this is life-threatening? I was spooked by a fellow EDSer’s emergency surgery for a ruptured bowel and resulting colostomy bag, but I was even more concerned about the possibility of an elemental liquid diet or a feeding tube. I’ve gone to great lengths to keep a varied diet, not only because food is my one joy besides dogs, but also because I know so many people who never got foods back after strict and prolonged eliminations. And feeding tubes — I never want tubes of any sort stuck in my body, too many complications. It’s the reason I’m still doing weekly peripheral IVs after five years, rather than getting a port or PICC (I don’t know anyone else who has come close to tapping veins for this length of time).

The CT scan showed nothing except my big lunch and tampon (a mortifying radiology report: unremarkable, TAMPON, unremarkable, unremarkable, COPIOUS AMOUNT OF INGESTED MATERIAL IN STOMACH, unremarkable etc…) and the acute bowel pain eventually faded back to my regular constant ache with periodic stabbing knives and electric zaps. But it sure got my attention.

I started Motegrity, a selective serotonin type 4 (5-HT4) receptor agonist, which cost $265 for one box (bought online from Canada because my insurance balked) and then caused possibly the worst medication reaction I’ve ever had. I started Linzess, which cost $350 for one bottle and either causes nothing to happen or a full day of sharts. I’m still taking Iberogast, Miralax, BPC-157, SBI Protect, Thorne SF722, oregano oil, berberine, magnesium, digestive enzymes, betaine HCl, and probiotics… all for my bowels. I’m about to try Mestinon, LDN and Cromolyn again (okay, I take it back, the latter was actually the worst medication reaction I’ve ever had — and I’m going to try it again, which has to show my level of desperation); these are all medications that can help motility. Plus, I have a Xifaxan prescription at the ready (which I’ve already taken twice) when I’ve exhausted all of these options.

It’s a next level problem. What I mean is, there were four years in the beginning of this chronic illness when I was “just” dealing with ME and MCAS — when I could still poop! When it was “just” muscle pain, but my joints were fine and my bones felt sturdy. Unbelievably, there were years when I didn’t have brain symptoms. I had the low-level kind of brain fog that made you forget things or not be able to find words, but, in the beginning, I didn’t have the buzzing brain and eye pressure, slurring and screaming tinnitus that makes bed the only possibility, even if my body is feeling strong. These new additions take illness management to the next level.

I’m on my third gastrointestinal doctor. The first said: Miralax, papaya, probiotics. Huh? Did you even hear the part about dead colon? On a return visit, she said: Daily enemas for life. Are you fucking joking? I asked her when she would recommend a colonoscopy (back before I realised it would need anesthesia in my case). When you have bloody diarrhea, she said. Right. Okay.

The second GI doctor said: Colonoscopy and endoscopy. On a return visit, she said: COLONOSCOPY AND ENDOSCOPY. She would not talk about any other tests or interventions. I don’t want to go through that. I don’t think those procedures will show anything and, with my medication reactions, there are legitimate risks to full anesthesia, not to mention the clean out having risks because of my hypotension and hypoglycemia. I thought (and still think) that it was prudent to exhaust less invasive options first.

These two doctors were young women at the University of Washington, one touted as The Motility Expert and the other as being EDS-knowledgeable. I mention this because I would assume I would be most comfortable or have the best experience with them instead of the third GI doctor, who is an old man that made a slightly misogynist comment right out of the gates and doesn’t make much eye contact. But he has been the only one to think outside the box and marginally help me. He ran tests that nobody has ever run since I’ve been sick (I’d never had a stool sample done or celiac test!) and spent 40 minutes discussing my mast cell history before even broaching the subject of my bowels. He dismissed a colonoscopy and it felt like he’d lifted a 100-pound weight from my shoulders because I was crippled with guilt after rescheduling the procedures over and over for a year and a half.

So, because of the progression of bowhell symptoms and structural issues the last few years, I have been pursuing MRIs and neurosurgical consultations. A cine CSF (cerebral spinal fluid) flow study showed a lack of CSF in my hind brain, caused by low-lying cerebellar tonsils (LLCT). My neurosurgeon (who is experienced in dealing with EDS/MCAS/ME patients) also suspected craniocervical instability (CCI), but couldn’t recommend surgery from my MRI measurements and symptoms without first performing more tests (invasive cervical traction (ICT), where they lift up your skull with a pulley system to see if there is an improvement in symptoms, and intracranial pressure monitoring (ICP ), which is a bolt in the skull that holds a probe that measures pressure in your head while concurrently preforming a lumbar puncture). I decided not to do either of those because, as you might have guessed, I don’t like rocking the boat (with, say, a new soap, let alone invasive tests that involve holes in my skull) (oh, and travel across the country) (and covid). But I have wondered if the blocked CSF flow is contributing to or entirely causing my brain symptoms. That’s a big deal. I used to feel smart and effective.

But the biggest deal of all came from the neurosurgeon looking at my pelvic MRI defecography from five years ago (which I didn’t even send to him because I was only consulting him about my neck; he must have gotten it from my specialist, who was the referring physician).

“You have a large bowel,” he said.

“I’m not surprised.”

“And what have you been told about your enormous bladder?”

“My what?” He has a thick Italian accent straight out of central casting and I didn’t know there was anything abnormal about my bladder.

“Your enormous bladder. Your ENORMOUS BLADDER!”

He had to repeat it four times before I could understand what he was saying. It was pretty comical. Nobody had ever mentioned my bladder. He recommended a renal ultrasound to rule out hydronephrosis, urodynamic testing for neurogenic bladder, and a lumbar MRI to look for tethered cord. I’m sure you’ll be shocked to know, I ignored it all… until I watched online presentations by Petra Klinge, probably the top tethered cord specialist in the country, and a Q&A with Dr. Klinge and Jeffrey Greenfield where they mentioned that, although bladder symptoms are the hallmark of pediatric tethered cord, in adults it’s often bowel problems, usually constipation. Ah.

I sent my lumbar MRI (both prone and supine) to my neurosurgeon and he diagnosed “tethered cord, classic variant,” which is notoriously hard to see. In other words, as my complex disease specialist emphasized to me repeatedly, it is rare for this neurosurgeon to diagnose tethered cord before CCI from a lumbar MRI. This is the case even though they have both actively been trying to identify it early since so many of their patients have to return for a second “detethering” surgery after undergoing craniocervical fusion.

“Elizabeth, why aren’t you on a plane to New York for SFT [sectioning of the filum terminale]?” my specialist asked me.

Friends, I DON’T WANT SURGERY. EVER. No surgery, but ESPECIALLY NOT SPINAL SURGERY.

I will leave you there. We have much to discuss. This is now my focus. I need to do everything I can to manage these symptoms and to halt their progression. Meds, exercises, physical therapy, prolotherapy, I don’t know what. Right now, my plan is to plan. I’m not willing to see any healthcare practitioners in person, so it’s tricky, but it’ll be a winter of research and putting some ducks in a row.

I also have to start preparing for a what might be an inevitable surgical eventuality. I need a pain management protocol with bigger guns than paracetamol, I need to strengthen my core and my bones, I need to find muscle relaxants to which I don’t react, I need to get my blood pressure up and control my MCAS as much as possible. I need to save money. No more ignoring.

Happy Samhain, everyone. And my 9th “sickiversary” — not a happy day, but one that should be acknowledged, nonetheless.

RIP Riley, maybe the best dog that has ever lived. 2007ish – October 1st, 2020.

When we first met him, his name was Rally. That’s what the rescue organization had called him because he’d rallied back from death’s door after being found emaciated in a barn in Roy, Washington. It was an apt name. He rallied so many times throughout his life. While we fostered him, he was placed in 3 different “forever” homes that didn’t work out for various reasons (thank god). Each time, he put up no fuss, he just gently and dutifully walked away from us and tried to make the most of the new families (he did this going into veterinary clinics and doggy daycares, too. He never stubbornly refused or cried like Bowie did — Riley trusted so deeply, just… “okay, Mama, if you say so.”).


I sobbed whenever he left and wrote letters to the new families, telling them about how he liked to manage the house, how he needed to know where everyone was at all times, checking to make sure each pack member was doing okay. I’d tell them about his Lassie-like communication — he had different barks for play, anger, urgency, a danger bark for when he saw a stinging insect or a spider, a tattle-tale bark for when he was alerting us to Penny’s or Bowie’s wrongdoing (“he’s got his head in the bin, Mama, come quick!”). I told them how sensitive he was to tones of voice, how he would become a boisterous court jester in order to stop an argument, barking and throwing toys around. How he would claw at your chest or lean his weight against you, if he heard crying or a painful moan. Bowie always retreated from negative vibes, but Riley moved towards them, knowing he was the saviour. I told the families that his lunge and growl looked ferocious, but they were just a joke — bravado — so please don’t chide or discipline him. And, even though he was only one or two years old, he had already had a hard life, almost succumbing to starvation, with only a partial tail and an arthritis-bent back, so please treat him kindly. They wouldn’t have understood him completely, we know this in our hearts. We were meant to be his and we finally figured that out. 


He became Riley to us — “Little Guy” at 65 lbs because Bowie was such a big guy — but he continued to rally. He almost died of giardia at 3 years old. He broke a toe chasing squirrels and dealt with a cast for months and eventually an amputation. He had two dental surgeries and bounced back with no complaints. He was impossibly fast — he’d run behind the car on the beach like a greyhound, even as his arthritis got progressively worse. He limped more and more over the years, but was always thrilled to go on walks, chase a ball and battle it out with the dangerous heft (and nails) (and tails) of our Rhodesian ridgebacks. His resilience was inspiring, but we had to rein him in and save him from himself.


His sickness was sudden and his death was harrowing, I won’t sugarcoat it. GI trouble led to diagnoses of acute pancreatitis, aspiration pneumonia and an 11 x 10 cm mass in his abdomen. He tried to rally. He was in and out of 3 different clinics and all the doctors were heroes, talking me through my questions in the middle of many nights and grieving with me afterwards. Riley died at home while my husband and I held him. We were telling him his origin story when he took his final breaths: “Remember how you met Daddy and Bowie in the park on December 12th and Daddy called me at work to tell me the good news and I raced home to meet you?”


Riley had the most free, life-loving spirit of any dog we’ve ever known. If we let him off-leash, he was gone — he wanted to explore every inch of this world. I always smile remembering when we took him to a lure coursing gathering for ridgebacks. All of these hounds, focused and serious, torpedoing after the lure in a big semi-circle, not taking their eyes off it. And then Riley… he would chase it about a third of the way and then skip away from the course in a joyous arc, running free into the field beyond because WOW LOOK AT THOSE TREES I SMELL A SQUIRREL WHAT’S THAT CAR OVER THERE SO MUCH GRASS TO PEE ON… I will always laugh-cry thinking about Riley smiling, carefree, freedom-skipping away to his own drum, oblivious to our calls, in between the trained, studious ridgebacks’ runs.


Run free, sweet boy.

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“He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.”–Anonymous